Stages of Risk: Economies of Ambivalence in Cancer Genetics

By

A. Coleman Nye

M.A., Brown University, 2010

B.A., New York University, 2006

Submitted in partial fulfillment of the requirements for the degree of

Doctor of Philosophy

in

Theatre and Performance Studies

in the department of

Theatre Arts and Performance Studies

at

Brown University

Providence, RI May 2014

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© 2014 by Alice Coleman Nye This dissertation by Alice Coleman Nye is accepted in its present form by the Department of

Theatre Arts and Performance Studies as satisfying the dissertation requirement for the

degree of Doctor of Philosophy in Theatre Arts and Performance Studies.

______! Date Rebecca Schneider, Advisor

Recommended to the Graduate Council

______! Date Sherine Hamdy, Reader

______! Date Nicholas Ridout, Reader

______! Date Patricia Ybarra, Reader

Approved by the Graduate Council

______! Date Peter M. Weber, Dean of the Graduate School

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VITA

A. Coleman Nye was born in Roanoke, Virginia on 18 April 1983. She received her Bachelor of Arts degree in Anthropology with a concentration in Gender and Sexuality Studies (honors) from New York University in 2002. Her honors thesis was a historical and cultural analysis of sexuality, gender, and disability in the United States entitled “Phantom Pleasures: The Eroticization and Contestation of the Amputated Female Form.” ! In 2009, Coleman conducted transnational comparative ethnographic research on genetic testing and prevention practices in the US, France, and the Netherlands. Some of the fieldwork she conducted for this trip informed her Masters thesis in Anthropology at Brown University “Assembling Previvors: Bodies of Relation and Configurations of Care in the Lifeworlds of Hereditary Cancer Risk.” Coleman’s article, “Cancer Previval and the Theatrical Fact,” drawn from Chapter Three of this dissertation, was published in a special 2012 issue of TDR: The Drama Review alongside the work of Judith Butler, Jasbir Puar, Randy Martin, and Rebecca Schneider. Her essay “Untimely Economies of Survival,” which is excerpted from dissertation Chapter Four was published in Women and Performance: a journal of feminist theory in 2013 and was a finalist for the Anthropology of Science, Medicine, and Technology Graduate Student Paper Prize. Coleman has organized panels and shared work at annual meetings for the American Society for Theatre Research (ASTR) and Performance Studies International (PSi), and has delivered papers at international conferences for the Society for the Social Study of Science (4S) and the Society for Cultural Anthropology (SCA).

Coleman completed her dissertation with the support of a Cogut Humanities Center Graduate Fellowship during the 2013-2014 academic year. In her time at Brown University, she has taught courses in Medical Anthropology and Performance Studies.

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ACKNOWLEDGEMENTS

This project has changed shape many times over the years, and I am deeply indebted to a number of people and institutions for giving it form. Most notably, my advisor Rebecca

Schneider is a remarkably generous mentor and incisive thinker who has been an unparalleled source of intellectual growth, support, and energy throughout this process. She has shown me how to approach questions of performance with a critical rigor that does not sacrifice a commitment to play, and has enabled me to take risks and to find pleasure in my research, thinking, and writing in unprecedented ways. It is difficult to put into words what

Rebecca has done for me over the years because she has truly done so much. I am also indebted to Sherine Hamdy for her friendship, humor, and razor-sharp critiques. She has always pressed me to make linkages across scales of analysis, to remain aware of my own assumptions, and to attend carefully to cultural sites of contradiction and contention. I have benefited enormously from Nicholas Ridout’s remarkable generosity and clarity of thought.

He has taught me the meaning of intellectual partnership: he is always willing to go on a meandering journey through ideas, and has skillfully helped me to chart a course between seemingly incommensurate spheres of thought on more than one occasion. Patricia Ybarra has reminded me of the importance of thinking history through the present, has provided enormous insight into the political dimensions of performance, and has crucially helped me to be less precious and to just write.

This project began in the Anthropology Department at Brown University before moving into Theatre and Performance Studies. I am indebted to Catherine Lutz and Daniel

J. Smith for their generosity and support in helping me to develop my project in

Anthropology before shepherding it into another field as it changed shape. I am grateful that

v ! this project began in Anthropology before moving into Theatre and Performance Studies, and I owe much of this trajectory to the guidance, encouragement, and insights of Emily

Martin, Don Kulick, and Lisa Duggan during my time as an undergraduate at New York

University.

Several generous fellowships and collectives made it possible for me to develop this dissertation. I am grateful to Brown University’s Graduate School, the Pembroke Center for

Research on Women, and the Cogut Humanities Center for providing me with the funding, support, and space to pursue my work. My work has also benefitted considerably from feedback in the Cogut Fellows Seminar and two Mellon Graduate Workshops – “Disability and the Body in Theory” and “Speculative Critique: The Politics of Theorizing Risk,

Uncertainty, and Potential in a Biopolitical Age.” Many of the insights gleaned from wild, wooly, and wonderful conversations with Rebecca Schneider and Michelle Castaneda in our

“Totemism” reading group have made their way into the pages of this dissertation. And for that, I am thankful. Many friends and colleagues have generously read and discussed portions of this dissertation over the years, and I am uniquely grateful to Anna Fisher and

Patrick McKelvey for providing brilliant feedback and being relentless champions of my work. Members of my adoptive cohort, Lindsay Goss and Hans Vermy, have also provided much-needed solidarity this year, as we jointly navigated the vagaries, stresses, and successes of completing and defending our dissertations. Much gratitude is also owed to my colleagues in the department, Michelle Castaneda, Michelle Carriger, Rebecca Henriksen, Ioana Jucan,

Lillian Mengesha, Stefanie Miller, Christine Mok, Elise Morrison, Dan Ruppel, Eleanor

Skimin, Timothy Simonds, and Andrew Starner, who have been incomparable sources of community, pioneering conference travel companions, and have made this whole process

vi ! more fun. Finally, a special thanks goes to Janet Peters of Brown’s Writing Center for her unwavering support as a cheerleader, friend, and supervisor during my writing.

Beyond the resources of Brown’s campus, I have also benefitted from sharing my work at international conferences including Performance Studies International (PSi), the

Society for the Social Study of Science (4S), and the American Society for Theatre Research

(ASTR). The “Everyday Life” working group at ASTR afforded a particularly generative space to develop my work over two consecutive years, and I am grateful to Robin Bernstein and Kyla Wazana Tompkins for making these conversations possible.

Chapter Three of this dissertation was published in a special issue of TDR: The

Drama Review, and I thank the editors of the journal issue – Rebecca Schneider, Nicholas

Ridout, Mariellen Stanford, and Leon Hilton – for their lucid and thorough feedback. I am also grateful to Tavia Nyong’o, Atalanta Wilcox, and anonymous reviewers for helping me to strengthen parts of Chapter Four for publication in Women and Performance.

Of course, none of this work would have been possible without the immense generosity and insight of the patients, families, and researchers who are living and working with new genetic technologies. Many of these people were gracious enough to share their knowledge, friendship, and experience with me. Others were generous enough to share their narratives with wider audiences through blogs, memoirs, and documentaries. Their stories have taught me a great deal about the contemporary landscape of women’s health in the US and I hope that this dissertation does some justice to the complexities of their lives, hopes, and frustrations, as they have so artfully articulated them.

Lastly, I want to thank my friends and family who have inspired and sustained me.

Christina Fitzpatrick, Anna Fisher, Patrick McKelvey, Sarah Newman, Courtney Henggeler,

Lindsay Goss, Kristy Fitzgerald Melia, Cheryl Lucas, Antoine Traisnel, and Steve Volpe have

vii ! shown incredible patience, understanding, warmth, generosity, and humor, as they have propped me up in innumerable ways over the years. For them, I am so incredibly grateful. In

September, I had the gift of a new sister-in-law Krista Eastman, who constantly amazes me with her thoughtfulness, wit, and intellect. Her care packages, kind words, and cogent input on my writing have been such a gift. My brother Leith Nye was instrumental in my decision to pursue a PhD and has been there for me in incalculable ways over the years. Beyond that, he has taught me the value of slow, deliberate thinking and has been an invaluable source of guidance, critique, and calm. In the daily delights and drudgeries of dissertating, I have been buoyed by Peter Bussigel, who has listened and talked and read and listened and talked and read, showing infinite generosity, compassion, and curiosity in every exchange. I continue to learn so much from him every day and this dissertation and I are in much better shape because of him. Finally, my parents, Butler Knight and Bill Nye have been an unparalleled source of emotional, intellectual, and material support. They have read all of my work, seen me through all of my breakthroughs and breakdowns, and have consistently called forth the best in me. I truly could not have started or finished this dissertation without them and my debt of gratitude to them is immeasurable. Thank you.

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TABLE OF CONTENTS

Introduction Theatrical Ontologies 1

One Like Begets Like: Coordinating “Likenesses” in the History of Cancer and Heredity 19

Two The Performance of DNA: CopyCodeCapitalCopyCodeCapitalCopyCodeCapital 59

Three Not Not Cancer: ‘Previval’ and the Peculiar Privilege of Futurity 117

Four Promises, Promises: Untimely Economies of Life and Performances of Risk in Venture Science 145

Five Biological Properties: Gene Patenting and the Mimetic Laws of Nature 181

Bibliography 212

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ix ! LIST OF IMAGES AND ILLUSTRATIONS

Figure 1 Moritz Nahr, c. 1925, Four photographs of Ludwig Wittgenstein and his sisters taken by Moritz Nahr, Wittgenstein Archive, Cambridge UK … 32

Figure 2 Ludwig Wittgenstein and Moritz Nahr, c. 1925, Composite portrait of Wittgenstein siblings, Wittgenstein Archive, Cambridge UK ……………. 33

Figure 3 Paul Broca, 1866, family cancer pedigree published in Traité des Tumeurs (P. Asselin: Paris). Translation courtesy of Anne Krush, 1979 ……………… 40

Figure 4 Aldred Warthin, 1913, cancer pedigree of “Family G” published in Archives of Internal Medicine ………………………………………………... 50

Figure 5 Rosalind Franklin and Raymond Gosling, 1952, “Photograph 51” in the B form, Kings College London, © Nature Publishing Group ……………….74

Figure 6 Bassam Lajin, Amal Alachkar, and Sakur A. Alhaj, 2012, X-ray image of agarose gel electrophoresis, North American Journal of Medical Sciences ……. 102

Figure 7 Joanna Rudnick, 2008, In the Family (Chicago: Kartemquin Films) …….…117

Figure 8 National Breast Cancer Coalition, 2010, “Breast Cancer Deadline 2020” newspaper advertisement, © National Breast Cancer Coalition …….……160

Figure 9 National Breast Cancer Coalition, 2012, Screen capture of website BreastCancerDeadline2020.org, © National Breast Cancer Coalition ……170

Figure 10 Lisa Stone and Breast Cancer Action, 2013, Photograph of patient activists on US Supreme Court steps on the day of the oral arguments for Association of Molecular Pathology v. Myriad Genetics, Inc., © Breast Cancer Action …………………………………………………181

Figure 11 Caitlin Carmody and American Civil Liberties Union, 2012, Screen capture of ACLUwebsite campaign to “Take Back Your Genes,” © ACLU ……..193

Figure 12 Genetic code as text, Coleman Nye, 2013 ……………………………… 196

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INTRODUCTION

Theatrical Ontologies

“My mother fought cancer for almost a decade and died at 56.” So opens American actress Angelina Jolie’s New York Times Op-Ed piece on May 14, 2013. In the short editorial entitled “My Medical Choice,” Jolie describes her decision to undergo a preventive double mastectomy to reduce her risk of developing the cancer that killed her mother. Jolie inherited what she calls a “faulty gene” known as BRCA1 from her mother. Mutations in this tumor suppressor gene impair its ability to regulate cancerous cell growth, increasing a woman’s lifetime risk for developing breast cancer by up to 87 percent and raising her ovarian cancer risk as much as 50 percent. The actress explains that she decided to be

“proactive” about her genetic risk: she underwent surgery to have her healthy breasts removed and made plans to also have her ovaries removed later in the year. Jolie writes that she finds great comfort in the fact that “I can tell my children that they don’t need to fear they will lose me to breast cancer” because she has undergone surgery to intervene in her risk for the disease. She concludes by noting that the challenges in life that “should not scare us are the ones we can take on and take control of.” However, she worries that the high cost of the commercial tests for the BRCA1 and BRCA2 genes will make it difficult for other women to gain access to “gene testing and lifesaving preventive treatment” so that they, too, can “take control” of their diseased destinies.

1 ! Jolie’s disclosure of her genetic predisposition to cancer and decision to undergo preventive surgeries to remove her breasts and ovaries set off a cascade of accolades, critiques, clarifications, and comments that skipped across the social, political, and economic spectrum of cancer. Notably, in many responses, both lay and expert stakeholders in the field of cancer genetics openly acknowledged that Jolie was surgically treating cancer that was not actually cancer within the strict clinical definition of disease as pathology. At the same time, they also emphasized the necessity of materializing and intervening in disease risk in much the same way that one intervenes in an already manifest disease. In short, most people actively recognized and embraced the paradoxical nature of Jolie’s cancer risk, which was not cancer, but was not-not cancer. Further, those who pointed to the contradictory, yet generally uncontroversial reality of treating risk as if it is disease were often adept at drawing out the intersubjective, affective, and cultural dimensions of this not-not category of disease.

Cancer activists and clinicians alike pointed to the multiple modes of knowing that are at play in materializing genetic risk as disease. They explained the affective dimensions of care, relation, obligation, and intuition that shape many families’ experiences of hereditary disease risk and decisions to take preventive measures. Meanwhile, they also developed sophisticated critiques of the cultural emphasis on personal responsibility and consumer choice that animates the commercial US health industry, and carefully elucidated the problematic entanglements of technoscience and capital that differently shape women’s knowledge and access to healthcare at the levels of both social justice and biomedical intervention.

In this dissertation, I take up the ambivalences, contradictions, and critiques that have constellated around breast and ovarian cancer genetics as an invaluable point of entry into examining the shifting social and political landscape of women’s health in the contemporary US. I approach the BRCA genes as a site of encounter between political

2 ! economy, technoscience, and gender in twentieth and twenty-first century US, working across diverse social, scientific, clinical, economic, and legal domains to examine a series of genetic ambivalences that challenge common distinctions between biological nature and cultural artifice. As lay and expert actors are increasingly staging, rather than effacing, the constructedness of biological realities in cancer genetics, scientific understandings of biological “natures” have come to be understood as inextricable from social “second natures.” I suggest that these transformations signal a broader epistemic shift in the biomedical and life sciences: processes of naturalizing biological realities as unmediated matters of fact are giving way to theatrical practices of staging the contradictory conditions through which bodily matter and meaning are “made up.”

Stages of Risk

Celebrities, medical professionals, breast cancer advocacy groups, and social scientists all weighed in on Jolie’s surgical decision, connecting it to larger cultural and medical questions of cancer treatment and prevention, genetics, gender, commerce and medicine, intellectual property, body image, class, health literacy, disease ontology, and celebrity. The many supportive responses of celebrity breast cancer survivors seemed to set aside the ongoing tensions that have existed in recent decades between breast cancer survivors who have been clinically diagnosed with the disease and cancer “previvors” who are clinically diagnosed with hereditary risk for developing the disease. While for years

“previvors” have felt like outsiders or impostors in the cancer community, as women who

“haven’t suffered enough,”1 now many breast cancer survivors were commending Jolie for

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 1 In a conversation that I had with Sue Friedman, the founder of the major advocacy organization for women with a hereditary risk for breast and ovarian cancer, FORCE (Facing Our Risk of Cancer Empowered), she told me that she founded the organization to create a safe and supportive space for 3 ! her courage and bravery. Of course, this wasn’t the case for everyone. Breast cancer survivor and musician Melissa Etheridge described Jolie’s decision to get preventive surgery as “the most fearful choice you [could] make when confronting anything with cancer” since cancer is really caused by stress and the internal “environment of your body” (Etheridge with

DiGuglielmo 2013). Debates that ensued from Etheridge’s comment in particular showed up the enduring cracks and fissures that have divided members of breast cancer activist communities for decades around what causes cancer (genes, stress, environment?), what constitutes the need for surgical intervention (is the medical treatment of risk treating fear of the disease or the disease itself or both or neither?), and which aspects of breast cancer risk, treatment, and prevention should warrant public attention and scientific research funding

(genetic components, behavioral components, environmental components, social justice components?).

Meanwhile, medical geneticists and cancer experts gave interviews with correspondents from NPR, CBS, and other major news outlets, generally commending

Jolie’s decision and offering more information on genetic testing and preventive options for the roughly one percent of the population who might have inherited a BRCA1 or BRCA2

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! women living with genetic risk. She felt this was necessary because of hostility she had experienced at cancer support group meetings and the general lack of resources or support from medical and social establishments for women who were dealing with genetic cancer risk. Friedman recalls going to cancer support group meetings and being treated “as if I hadn’t suffered enough.” Anthropologist Sarah Lochlann Jain describes a similar experience: cancer survivors sometimes respond “unfavorably” to her public talks about cancer when she does not disclose that she, too, is a breast cancer survivor. She concedes, “Bristly cancer survivors make a valid point. How could you imagine the scene of the radiation room?” (2013: 18). This starts to get to some of the ontological questions that tug at the seams of the experience of women with genetic risk. First, many of them do know that a radiation room looks like through close family members who developed cancer. If cancer is genetic, that means that it runs in the family, so many “previvors” have lived with the disease even if it was not in their own bodies, but in the bodies of close family members. This touches on a second point: because of the significantly heightened cancer risk conferred by a BRCA1 or BRCA2 mutation and the medical recommendations (surgery, medication) that attend this genetic risk, many mutation carriers are living with cancer and it is as if they have it, even if they aren’t undergoing radiation or chemotherapy. 4 ! gene mutation. In an interview with Time magazine, for example, Dr. Eric Winer of Boston’s

Dana-Farber Cancer Institute observed that Jolie’s case “is one of the truly unique situations where most medical professionals would say if a woman chose to have both breasts removed, it’s a pretty reasonable thing to do” (Kluger et al 2013: 28). Winer’s comment reflects a majority of American medical experts’ opinions that were expressed in the weeks following Jolie’s editorial, emphasizing the rational (read: scientific) basis for what would generally be considered an irrational (read: drastic or emotional) surgical measure of removing healthy sex organs to preempt a disease that may never have developed.

At the same time, an article in the American Medical Association’s journal American

Medical News fretted over the nationwide increase in women seeking out unnecessary genetic testing after Jolie’s public statement (O’Reilly 2013). President of the Society of Gynecologic

Oncology Dr. Barbara Goff observed, “The big issue is that it’s the worried well who want to be tested and who don’t need to be tested.” For many of these “worried well” who don’t have significant family histories of cancer, getting testing for the gene mutations can often

“yield ambiguous results that can heighten their anxiety,” according to Goff (ibid). Other cancer specialists such as Otis Brawley of the American Cancer Society pointed to the social dimensions of over-estimating risk, worrying that the “Angelina Effect,” in tandem with the more general trend of “pinking America” through awareness campaigns (Kluger et al 2013:

28), would encourage more women to get unnecessary testing, overestimate their cancer risk, or undergo double mastectomies when cancer is only detected in one breast and there is little risk of cancer developing in the other breast (this trend has been documented in a medical study by Tuttle et al 2009). Brawley reminded readers that the BRCA genes only account for

5 to 10 percent of all breast and ovarian cancer diagnoses; the other 90 to 95 percent of cancers are caused by complex and little-understood gene-environment interactions.

5 ! Sue Friedman, the founder of the hereditary breast and ovarian cancer patient advocacy organization, FORCE (Facing Our Risk of Cancer Empowered), expressed gratitude to Jolie for putting a “more positive spin on the stigmatizing effect of having a

‘mutation’ and undergoing mastectomy.” At the same time, she worried that Jolie’s focus on the cosmetic outcomes of surgery and the “gift” of genetic knowledge risked obscuring the difficulties of preventive surgery and the complex issues of responsibility, guilt, avoidance, loss, and fear that affect individuals and families who are living with hereditary cancer risk

(Friedman 2013). Sociologist and author of Pink Ribbon Blues (2012) Gayle Sulik registered a similar concern about Jolie’s description of her “beautiful” surgical results and other media representations of her so-called “boob job,” pointing out that “sugarcoating or ignoring the risks involved in major surgeries like mastectomy and reconstruction are an affront to women facing life-threatening disease and fear about their futures” (Sulik 2013). These comments point to a need for more robust understandings of femininity and feminism that can recognize that womanhood is not reducible to or defined by one’s breasts or ovaries – in short, that a woman is not her sexual and reproductive organs – while also acknowledging the difficulties that attend surgically removing body parts to prevent or treat disease.

Indeed, many women in Jolie’s position struggle to make a “medical choice” about managing their cancer risk, as their choices are limited and far from ideal. Women who carry a cancer-predisposing gene mutation are offered three options for managing their risk for developing breast and ovarian cancer: they can begin an intense twice-yearly regime of MRI, mammography, and ultrasound screening to detect cancer early; alternately, they can consume the controversial chemopreventive drug Tamoxifen, which decreases breast cancer risk, but increases risk for other cancers as well as stroke and is banned in Europe; or finally, they can remove healthy breasts and ovaries. While touted as the “gold standard” in reducing

6 ! breast and ovarian cancer risk, this surgical measure brings with it a spate of other medical risks and side effects, as well as social consequences such as the loss of sensation, reproductive functions, and libido to name only a few. Beyond the unsatisfactory preventive options, the implications of knowledge about genetic disease risk far exceed the boundaries of a patient’s own body. If one person in a family gets tested and finds out that she carries a

BRCA1 or BRCA2 mutation, the entire family is affected by that knowledge – including young children who may be carriers of the mutation, siblings who might not want to know about their disease risk or who feel survivor guilt if they don’t carry the gene, and parents who often feel immense guilt for having unwittingly passed on a deadly disease to their children or who put pressure on their children to get invasive preventive surgeries to ensure that they increase their odds of survival.

Furthermore, due to biases that inhere in population sampling for genetic research and to the high cost of genetic tests, not all women have equal access to genetic testing technologies. For example, two US-based case-control medical studies found that women who identify as African American are 78 percent less likely to access genetic counseling and

BRCA testing than women who identify as white (Armstrong et al. 2005; Hall and Olopade

2005, 2006). Discrepancies such as this have been more widely attributed to historical legacies of structural violence (Wailoo and Pemberton 2006; Epstein 2007; Wailoo 2011), but are also evidenced in the biotechnology itself, which draws from genetic materials sampled from volunteer populations of mostly white and Ashkenazi Jewish descent. People of Ashkenazi Jewish descent, then, find themselves at the other end of the spectrum: this population is the most represented in the genetic test and the most likely to undergo genetic testing since many of the known deletions are Ashkenazi “founder” mutations (meaning that they can be traced back to one ancestor who had the original deletion).

7 ! In the days following Jolie’s explanation of her “medical choice,” breast cancer activists also pointed out that the limited forms of access and choice available to women who are at increased risk for cancer are shaped by a larger corporate culture of medicine.

Women’s genetic materials and health futures are deeply entangled with the profit motives and patent rights that drive the US health industry. In a blog post entitled “Celebrity Breasts and Corporate Gene Patents,” Karuna Jaggar of the major breast cancer watchdog organization Breast Cancer Action pointed to the troubling commodity value of women’s health in a political economic context in which women’s isolated genes are considered “man- made” and therefore patentable scientific inventions. Jaggar was deeply critical of the fact that major biotech company Myriad Genetics, Inc. has a medical monopoly on the genetic testing market due to their exclusive patents on the BRCA1 and BRCA2 genes. The company charges upwards of $3000 for the test, which is not always covered by insurance.

Even more alarming, this corporate monopoly, according to Jaggar, “gives Myriad control over research, testing, diagnostics and development of treatments related to the BRCA genes” (2013). Within this corporate equation, the “medical choice” of a woman who carries of a BRCA mutation is far from autonomous, unconstrained, or ideal, and the research that that contributes to this choice is far from unbiased, altruistic, or adequate.

The wide range of responses to a 2-page editorial written by an actress about her decision to surgically treat her risk for a disease render apparent some of the entanglements, complicities, affinities, investments, affects, and antagonisms that animate the shifting biopolitical terrain of women’s health in the late 21st century US. In the debates that fissured the breast cancer community, questions of what constitutes real cancer emerged both in relation to whether Jolie’s experience of cancer was real enough to count as cancer (or was it the faux genetic double of a cancer lived in relation to other familial cancers merely passing

8 ! itself off as real cancer?) and what more broadly, makes up the ontologically and epistemologically slippery disease of cancer itself when we do recognize it as such: is it a mutated gene, uncontrolled cell growth, tumor pathology report, prognosis, environmental toxicity, social inequality, brutal chemical treatment regimes, excised tissues? This concern about what constitutes cancer carried over into medical discourses, as doctors and genetic counselors worried over the affective dimensions of cancerous dis-ease within a shifting terrain of expertise and agency, as women might be too quick to seek treatment for a cancer that is not cancerous enough according to biomedical definitions. For these “worried well” women (O’Reilly 2013), it was acknowledged that their experience of the disease takes shape in relation to a broader risk culture of consumer choice, personal responsibility, familial care and obligation, hypervigilance, and early interventionism rather than simply through the machinations of medical expertise. Meanwhile, critical discussions regarding the commodification of women’s genetic materials and overall health challenged any straightforward understanding of disinterested science, of genetic nature as divorced from laboratory manipulation and corporate interference, and of the neutrality of medical information and intervention.

Far from being anomalous, this dissertation contends that these responses touch on a broader set of epistemic transformations unfolding across multiple, seemingly incommensurate scales and tenses of life. Rather than treating biomedical objects of knowledge and intervention as given or “natural” realities, I suggest that both lay and expert actors are increasingly staging entanglements of nature, culture, and artifice in contemporary practices of treating, researching, and representing genetic disease in women.

Sociologists of science and theorists of performance have long contended that knowledge is contingent, showing how matters of facts and the materiality of bodies are

9 ! stabilized as coherent, meaningful entities through iterative acts rather than through a metaphysics of truth (Foucault 1990; Butler 1993; Latour 1993; Haraway 1997; Mol 2002;

Barad 2007). Chapters in this dissertation extend and complicate these conventional readings of performativity by illustrating that, in the historical present, social actors are more self- consciously staging the ambivalence and dissonance of objects of knowledge and practices of intervention in genetic science and medicine. In short, rather than effacing the performatic, repetitive conditions through which matters of fact come to appear self-evident or given, increasingly it is becoming commonplace to highlight the contingency and ambivalence of epistemic objects that appear as themselves precisely because they are both natural and artificial at the same time. This is evidenced in laboratory practices of cloning genes in test tubes in order to generate knowledge about the genetic nature of disease in the body; it is made explicit in the medical clinic as women like Jolie are treating genetic risk as cancer by surgically removing healthy breasts and ovaries so as not to develop cancer in the future; it shows up again in the rise of collaborations between cancer activists and biomedical researchers as they invest and intervene in possible genetic futures in a speculative science market; and it undergirds the paradoxical logic of gene patenting in recent legal debates that figure genes as both patentable human inventions and unpatentable products of bodily nature.

In the chapters that follow, I suggest that these transformations are marked by a theatrical onto-epistemology. Theatre – as a space, practice, and concept – is undergirded by an “ontological queasiness” (Barish 1981: 3) such that the quality of being on stage is precisely that it is self-consciously composed through pretending to be. As Richard Schechner has argued, this is the ontological condition of the actor on stage, who is necessarily both

Hamlet and himself (not-Hamlet) at the same time (1985). In theatre, holding this difference

10 ! together in the same moment undergirds the central contract between the performer and spectator that enables the show to go on. Throughout this dissertation, I contend that this theatrical form of ontology has come to characterize dominant modes of knowing and intervening in bodies in the biomedical and life sciences, as stakeholders across diverse economic, political, social, legal, and scientific fields are necessarily staging the artifice of nature and rendering (bio)mimesis apparent. Within this theatrical epistemology of reality, the truth of knowledge objects or social subjects is that they are real because they are “really made up” (Taussig 1993). In this way, the actress who stages an illness that she does not have across her body becomes more authentic in the very “’outness’ of her inauthenticity”

(Schneider 2001: 110): she is straightforward about the mimetic underpinnings of a medical ontology turned theatrical, as she stages across her body the fact that being is composed through seeming.

A central thread of my argument is grounded in the contention that political economic transformations since the late 1960s have undergirded this epistemic shift. Policy decisions in this time have led to the rise of financial deregulation and speculation, the privatization of health and welfare, and the flexibilization of labor, which have in turn jointly contributed to an unprecedented ability and imperative to harness humans’ affective capacities and life’s reproductive capacities as the sites and sources of new modes of re/production (Cooper 2008; Gill and Pratt 2008; Harvey 2010). In the life sciences, this shift has been attended by an increased technological ability to manipulate and make living materials in artificial environments in conjunction with a growing emphasis on speculating on the financial, intellectual, and medical potentials of these materials (cells, genes, microbes, mice) to generate life and capital in a time off of the present (c.f. Sunder Rajan 2006; Cooper

2008). Simultaneously, an engorged commercial health care system has developed a range of

11 ! new diagnostic technologies and treatment measures to intervene in diseases before they become manifest, expanding the therapeutic domain to include risk futures as well as diseased presents (Dumit 2012). All of these interlocking spheres have become flexible zones of artifice and accumulation that traffic in multiple temporalities and traverse numerous scales. In this context, conventionally feminized modes of knowing such as affect, imitation, and relation have become increasingly vital, not inimical, to scientific, political, and financial practices. Further, within this changing landscape, certain lay actors are playing a more active and critical role in producing and contesting genetic knowledge to various effects.

Specifically, by staging, rather than effacing, the construction of genetic natures, lay actors are rendering newly apparent the uneven social, economic, and political landscape of women’s health in the contemporary US.

A Note on Methods

Working between the disciplines of Performance Studies and Feminist Science and

Technology Studies, each chapter of this dissertation traces the practices and contexts that make up the BRCA genes, arguing that a theatrical mode of ontology, which stages the artifice of nature and mobilizes mimetic ambivalence, has become central to the contemporary knowledge economies of cancer genetics. Taking advantage of the methodological and disciplinary promiscuity of Performance Studies, the research for this project is composed of multiple modes of data acquisition and analysis, rather than conforming to one mode of inquiry. Within each different context for producing knowledge about breast and ovarian cancer genetics – laboratory research into genetic links to disease, patient experiences of genetic risk, the convergence of activism, research, and advertising in genetic futures markets, or legal disputes over genetic property rights – I draw on a different

12 ! set of research methods to access the particular understanding of “genetics” that is the object of inquiry and intervention in that context. In this sense, I take for granted that different research practices and instruments produce different objects of study (c.f. Latour

1987; Haraway 1997; Mol 2002; Barad 2007). That is, I begin from the premise that a “gene” in the context of laboratory research is markedly distinct from a “gene” as it is experienced as the cause of recurrent cancer diagnoses and deaths in a family, even as both understandings of genes are equally valid and important in producing genetic knowledge.

Both of these meanings of a gene populate its definition, but they are not reducible to a genetic essence. Instead, the coordination of these manifold practices and modes of inquiry into “gene-ness” allows the gene to appear as a coherent entity, rather than a constellation of often contradictory meanings and materialities that figure it multiply as a molecular unit, a mode of inheritance, a form of risk, a unit of information, a form of property, or a part of the body.

Given the diversity of meanings that have been generated around breast and ovarian cancer genetics in the twentieth and twenty-first century US, the research and analysis into this field variously employs historiographic and ethnographic methods, critical analysis of visual, medial, and textual cultures, and close readings of legal and scientific documents.

Chapter One and Chapter Two draw mainly on historiographic methods of textual and visual analysis, bringing together close readings of patient memoirs, scientific and medical publications, political policy documents, and popular accounts of genetics in the press to develop a “diffractive” history (Haraway 1997) of the political, social, and epistemic contexts of genetic research into breast and ovarian cancers since the turn of the twentieth century.

Chapter Three is grounded in ethnographic research conducted in the US between 2009 and

2012 with stakeholders in the “previvor” community. I attended medical conferences and

13 ! patient support group meetings, in addition to conducting in-depth interviews with patients and their families, as well as genetic counselors, oncologists, and surgeons. Beyond these ethnographic accounts and interviews, I also treat patient blog posts, memoirs, and documentaries as primary sources of analysis. In making this decision, I follow Arthur

Frank’s claim in The Wounded Storyteller that published and edited stories of illness are no less

“true” than oral and unpublished accounts: “The truth of stories is not only what was experienced,” Frank writes, “but equally what becomes experience in the telling and its reception” (2013 [1995]: 22). In this sense, I take seriously the ways in which women choose to narrate and share their experiences of genetic cancer risk, and do not privilege the ethnographic narrative over the published account. In keeping with this commitment to the ways women choose to represent their experiences and how these representations are received or appropriated, in Chapter Four, I combine close readings of patient activist campaign materials, clinical research study recruitment documents, patient and activist narratives, and online forums to explore the changing landscape of patient activism and scientific research. In this chapter in particular, I treat the internet as a key platform for tracing these transformations and attempt to account for the ways this medium is employed by diverse stakeholders in cancer’s risk economies. Finally, in Chapter Five, I develop a critical textual and performance analysis of the oral arguments that unfolded in the US

Supreme Court case Association of Molecular Pathology v. Myriad Genetics, Inc. and read it within a deeper history of major court decisions and social controversies regarding the patentability of lively biological materials.

Finally, it should also be noted that, while I am writing a story of gender, performance, and technoscience, the actors and institutions that make up my inquiry into cancer genetics are imbricated in a complex social matrix of power and access. The field of

14 ! genetics is a dense biopolitical and historical topography of relations between individual bodies and population aggregates, in which risk, power, and knowledge are unevenly distributed across bodies, which are differently marked by race, class, gender, geography, and sexuality. As such, it is important to recognize that the most visible actors in my story of breast and ovarian cancer genetics are normative gendered subjects – heterosexual, white, middle class women. As such, their capacity to contribute to, contest, and stage knowledge production in genetics is inextricable from the historical, political, and social formations that charge their lives and bodies with certain properties of visibility, citizenship, futurity, and vulnerability (c.f Murphy 2012).

Chapter Outline

The first chapter, “Like Begets Like,” approaches “likeness” as a generative concept that enables us to map the heterogeneous assemblage of knowledges and practices that undergirded scientific studies into the overlapping and diverging fields of genealogical descent and hereditary disease before genetic discourses of breast and ovarian cancer became prevalent in the 1980s. I suggest that, since the late nineteenth century, both heredity and cancer have taken shape across lay and expert domains of knowledge through the dynamic coordination of different understandings of likeness – visible resemblances, genetic forms of sameness and relation, and cellular acts of repetition. Likeness – as a practice of making and seeing resemblances and as a quality of being similar, alike, but not quite the same – allows us to trace the intimate terrains and technological fields through which understandings of heredity and cancer have been mimetically materialized, defined, and transformed through representational practices such as photography, pedigrees, and microscopy. Simply put, I

15 ! show how hereditary cancer risk has come to be as an ontological category at the interstices of seeming and being.

In Chapter 2, “The Performance of DNA,” I trace fitful transformations in the performance culture of science during the second half of the twentieth century, as DNA was called upon to perform in a changing political, economic, social, and technological context of doing science. Specifically, I document the shifting moral economy of objectivity that marked the growing field of molecular genetics in the late 1960s, as modest witnessing gave way to immodest witnessing. I situate this shift in the context of transformations in science policy, government funding, and public opinion that forced massive restructuring of the biochemical and pharmaceutical industries, leading to the creation of new lively objects of nature-as-artifice and speculative modes of bioaccumulation in the life sciences. I conclude by tracing the moments and mediums through which the BRCA genes emerged at the blurry edges of the concrete in the lab before “mov[ing] on stage as ‘significant units’”

(Rheinberger 1997: 21), as scientific forums and popular media outlets repeatedly staged the genes as already present discoveries in advance of their actual localization.

My third chapter, “Not Not Cancer” moves from research on the BRCA genes to the clinical use of genetic testing and everyday experiences of women who are living with and managing genetic risk for breast and ovarian cancers. Drawing on interviews with oncologists and geneticists, observations in patient support groups, and analyses of biographies and online discussion forums, I examine the multiple rationales of care, relation, and time that many cancer “previvors” employ to materialize their genetic risk as simultaneously present and preempted disease in their healthy bodies. Through my ethnographic analysis of this practice of treating a disease that is not cancer, but is not not cancer, I claim that women are consciously staging the ambivalence of biomedical realities,

16 ! simultaneously exposing the affective labor of diagnosis and showing up the social and economic inequalities that inhere in the future-oriented field of biomedicine.

Moving into broader economic and affective circuits of survival, Chapter Four

“Promises, Promises,” takes the recent turn against hope in US breast cancer activism as a site from which to analyze the embodied effects of the financialization and biomedicalization of life on women’s health more broadly. Through careful analysis of a patient activist campaign and its role in clinical research recruitment, I illuminate how healthy women are increasingly being interpellated as experimental subjects in breast cancer risk studies. I contend that fractures between activist camps that have emerged around this recent development demonstrate frustrations and complicities of patient advocacy groups with a speculative enterprise model of biomedical science, while also making evident the pitfalls and promises of recent gendered innovations in knowledge.

My final chapter, “Biological Properties” employs the concept of mimesis to theorize the definitional quandaries that emerged in legal, lay, scientific, and economic discourses around genetic property in the 2013 US Supreme Court case, Association of Molecular Pathology v. Myriad Genetics, Inc in which the patentability of the BRCA genes was at stake. By contextualizing a close reading of the oral arguments, the final decision, and media responses to the case within a deeper history of patenting life, I argue that the epistemic anxieties about genes as property and the properties of genes, which emerged in the landmark legal case, staged the ontological multiplicity of genes and more broadly pointed to the enormous legal and cultural work that goes into maintaining a nature/culture divide. I suggest that the final court decision that unmodified DNA cannot be patented tenuously redrew the line between nature and culture in order to quell anxieties about the growing willingness to stage and play

17 ! with (rather than covering over) the undecidable difference between copy and original, or nature and culture in an increasingly biomimetic domain of life science research.

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18 !

CHAPTER ONE

Like Begets Like Coordinating “Likenesses” in the History of Cancer and Heredity

Family Resemblance

In her memoir, What We Have, Amy Boesky describes a familiar childhood scene: she and her sisters would linger in the upstairs hallway in their Michigan home, studying the faces of their deceased female relatives. These aunts, grandmothers, and great aunts were intimate strangers, having died from ovarian cancer before the girls were born. For Boesky, this hallway of family photographs was insistent evidence of a cancerous inheritance, indexing the malignant cells of ovarian cancer, leaping from frame to frame, replicating in body after body across generations:

Women in my family die young. For generations – as long as anyone can remember – they’ve all died from the same thing. Ovarian cancer. In my parent’s house in Michigan, we had black-and-white photographs of all the dead aunts and grandmothers and great-aunts hanging in the hallway of our second floor […] I used to walk up and down the hallway and look over this ill-fated all-female family tree. They all looked like one another, these women, like sepia-colored ghosts, leaning on each other’s arms standing in front of antique jalopies, squinting in front of foamy spray on some unidentified beach. In one picture, Sylvia, my mother’s mother, five feet two and flaxen haired, had her arms linked with Pody, her younger sister. They were both laughing, their mouths wide open […] You’d never guess, looking at them, what the future held: Sylvia dead at forty-three, Pody at forty-five […] [I]t was beginning to appear we were linked together in a long, fateful chain, one generation bound inextricably to the next (Boesky 2010: 23-26).

Boesky and her sisters grew up in the late 1960s and early 1970s when molecular biology was a growing field of inquiry into the genetic mechanisms of inheritance. However,

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during this time, understandings of heredity were largely relegated to the epistemic peripheries of cancer research and treatment. As geneticist Walter Bodmer described the prevailing attitude toward hereditary models of cancer, “cancer is essentially a genetic disease on the cellular level, but not a disease with a major inherited component” (Bodmer 1982: 1).

Cancer was generally understood to be a genetic disease because it arose from damage that happens in the reproduction of the cell, leading to uncontrolled cell growth; cancer was not, however, thought to be a disease that could be genetically transmitted – it was not inherited.

Most researchers at the time attributed clusters of cancer in families like Boesky’s to a combination of shared environment, a complex set of potential genetic susceptibilities, and possible exposures to unknown cancer-causing viruses.

“We knew cancer ran in our family,” Boesky writes. “We just didn’t know how”

(2010: 25).

In Boesky’s narrative, photographic likenesses of relatives who resembled each other provided visual evidence of the transmission of like traits: each generation was

“inextricably bound to the next” through family resemblance. For her and her sisters, this family resemblance was doubly evident in the similarities that linked them through the sameness of a disease of unchecked reproduction that arose again and again in the reproductive organs of women in their family. In the language of Roland Barthes, as he contemplated a photograph of his dead mother,

I read at the same time: this will be and this has been; I observe with horror an anterior future of which death is the stake. By giving me the absolute past of the pose (aorist), the photograph tells me death in the future (1980: 96).

Boesky and her sisters also dwelled in that hallway seeking out other family resemblances in the frames – different forms of genetic likeness that would offer some solace, some escape from cancer’s recurrence. The hope for Boesky, contra Barthes, was that

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this has been and this will be could be different, that the photographs could index the trace of another past, one potentially bound to an alternate future that flies against the sameness of cancer depicted in the long line of early deaths decorating the wall. “The only woman on my mother’s side who’d made it past fifty was my great-grandmother Bea,” writes Boesky.

She was a despot, but she lived to almost ninety, and [my sister] Julie decided she liked her picture best. “I think I look most like Grandma Bea,” she’d say hopefully, peering up in the hallway at a smudge of wavy, obsolete hair (2010: 26).

In a moment when cancer and heredity were seen to be etiologically at odds, Boesky and her sisters made sense of their cancerous inheritance through cobbling together a composite theory of relation that drew on the enduring mimetic axiom that “like begets like,” yoking cancer and heredity together into a coherent discourse of the threat and promise of resemblance. To be like is to be related; it is to be similar, but it is not to be the same.

“Nature creates similarities,” writes Walter Benjamin of the mimetic faculty. “The highest capacity for producing similarities, however, is man’s” (1933 [1979]: 333). Since the late nineteenth century, both heredity and cancer have taken shape across lay and expert domains of knowledge through the dynamic coordination of different understandings of likeness – visible resemblances, genetic forms of sameness and relation, and cellular acts of repetition. Likeness – as a practice of making and seeing resemblances and as a quality of being similar, alike, but not quite the same – allows us to trace the intimate terrains and technological fields through which understandings of heredity and cancer have been mimetically materialized, defined, and transformed through representational practices such as photography, pedigrees, and microscopy. In this chapter, I approach “likeness” as a generative concept that enables us to map the heterogeneous assemblage of knowledges and practices that undergirded scientific studies into the overlapping and diverging fields of genealogical descent and genetic disease before genetic discourses of breast and ovarian

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cancer became prevalent in the 1980s. While I focus on the science of genetics (both at the level of familial inheritance and the level of the cancerous cell replication), I do not treat science as an enclosed field or a monolithic structure. Instead, I trace the ways in which the sciences of heredity and cancer have been articulated and rearticulated as “effective field[s] of appearance,” to use Foucault’s phrase (1972: 144), through the ongoing affinities and antagonistic relations unfolding between scientists, social scientists, cancer pathologists, social workers, and families as they have jointly participated in generating contradictory modes of “making sense” and “making up” familial and cancerous likenesses from the late nineteenth until the mid-twentieth century.

Taking my cues from feminist scholars in science studies such as Donna Haraway

(1997), Karen Barad (2007), and Michelle Murphy (2012), I write against the linear march of scientific progress. Instead of writing of the developments that led from classical genetics to molecular genetics, I focus on the accumulation, exclusion, reactivation, and dispersion of understandings of cancer, heredity, and cancerous heredity within and across different historical periods. In this process, I attempt to decenter any one subject or subjectivity – the patient, the family, the scientist – or object or objectivity – the pedigree, the photograph, the pathology. These sundry technologies and subjectivities that marked early research into the similarities that (human) nature creates continue to exist and have value for patients like

Boesky as well as researchers in a molecular age. 2 In ensuing chapters, this genealogy of likeness threads itself through the complex configurations of care, time, and relation that are woven into the knowledge economies of hereditary breast and ovarian cancer. !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 2 “[T]o follow the complex course of descent [and disease],” according to Michel Foucault, “is to maintain passing events in their proper dispersion; it is to identify the accidents, the minute deviations – or conversely, the complete reversals – the errors, the false appraisals, and the faulty calculations that gave birth to those things that continue to exist and have value for us (1977 [1991]: 81).

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I open this chapter with an exploration of the idea of “family resemblance” in the work of Francis Galton in the late nineteenth century, as he employed the increasingly popular technology of photography as an important tool in visualizing biological inheritances. By layering family photographs into a composite portrait, Galton believed that he could capture the visual evidence of the underlying substance of relation. He understood these likenesses to be the “truth of lineage,” unveiling the deeply ingrained, fixed biological similarities that nature reproduces consistently across generations and which cannot be altered by nurture. One of these unchanging traits that Galton sought to capture was hereditary disease, including cancer.

Through much of the nineteenth century, chronicity and heredity were understand to be deeply entangled within Galenic models of constitution and Larmarkian understandings of “soft” inheritance. It was generally understood that any practice or sickness that endured

– any habit that was repeated enough or any disease that did not respond to treatment – during the course of a lifetime became an unchanging aspect of a person’s biological constitution that could be passed on to future generations. However, through the standardization and meticulous construction of family pedigrees during the mid to late nineteenth century, social and medical scientists subjected these patterns of diseased inheritance to more regular empirical scrutiny. The construction of these pedigrees stabilized biological and cultural understandings of diseased relations, while also remapping the temporal topography of hereditary disease: moving away from chronic and recursive tenses of inheritance, pedigrees linearized heredity into unidirectional models of descent that more closely aligned with Galton’s model of biological determinism and Darwin’s theory of evolution. By 1900, these discourses began to triangulate with the rediscovery of Mendel’s laws of inheritance in the growing field of genetics.

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During the same time period that social and experimental scientists were visualizing relation and refiguring descent, cancer pathologists such as Rudolf Virchow were beginning to examine cellular patterns of reproduction. Crucial findings that normal cells beget normal cells that sometimes mutate and beget “monstrous” cancer cells began to radically reconfigure temporal and relational understandings of cancer and heredity. Notably, this cellular theory of likeness (and unlikeness in the case of mutation) transformed understandings of cancer from a chronic disease defined by visible symptoms to a treatable disease marked by linear cellular development toward malignant pathology. This ushered in a new era of early diagnosis and treatment that was based on the analysis of cell growth under a microscope, as doctors came to believe that the only way that people could survive cancer was if they caught it before symptoms developed. The fixedness, chronicity, and stigma attached to hereditary models of cancer were at odds with the rise of anticipatory research and treatment agendas that saw disease as a linear progression of symptoms from cell mutation to tumor formation to metastasis. As such, the first half of the twentieth century was marked by massive public education campaigns that attempted to sever the connection between cancer and hereditary, and institutionalize an “early-than-early” regime of diagnosis and treatment for sporadic cancer.

As historians of science and performance have shown, changes in regimes of knowledge and power do not erase or replace the regimes that appear to have preceded them through a historical rupture. Instead, these transformations unfold unevenly and partially, and the “new” regimes are always necessarily composed through and of that which they claim to have succeeded, erased, or displaced. As Bruno Latour suggests, “the past is not surpassed, but revisited, repeated, surrounded, protected, recombined, reinterpreted, and reshuffled” (1993: 75). As cancer was detached from heredity within this shifting linear

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framework of disease and descent, some families and doctors still insisted on their entanglement. From the 1910s until the late 1970s, a handful of actors used some of the same “old” technologies that made up the “new” knowledge regime of genetics to craft a counter-epistemology of cancerous inheritance. It is within this epistemic space of “fringe” science and “folk” knowledge that I conclude this chapter, by exploring how some geneticists, oncologists, and families collaborated to make sense of hereditary cancer and to make up a preventive treatment regime for women living with this relative pathology.

Like Begets Like

The world is beginning to perceive that the life of each individual is in some real sense a prolongation of those of his ancestry. His character, his vigour and his disease are principally theirs; sometimes his faculties are blends of ancestral qualities, more frequently, they are aggregates, veins of resemblance to one or to the of them showing now here and now there. The life histories of our relatives are, therefore, more instructive to us than those of strangers; they are especially able to forewarn and to encourage us, for they are prophetic of our own futures. - Francis Galton, “Photographic Chronicles from Childhood to Old Age,” 1882

Don’t think, look! - Ludwig Wittgenstein, Philosophical Investigations, 1953

Since the late medieval period, the classification of “hereditary disease” has been used to describe illnesses that recur across generations of a family. For example, in 1554,

Jean Fernel wrote in his Medicina: “children succeed their fathers, and are no less inheritors of their infirmities as of their properties” (1554: 587, quoted in Rheinberger and Müller-Wille

2012: 42). This quote, however, draws on an older juridical sense of heredity, which preceded more recent understandings of biological inheritances. Up until the late nineteenth century, inheritance, while often (but not necessarily) linked to biological kinship, was a legal

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category that referred to the distribution of property and status across generations.

Transgenerational similarities, rather than being maintained through the caprice of “natural” reproduction, were stabilized and transmitted across generations as the result of a vast constellation of factors including legal norms, shared climate, maternal imagination, economic status, and local traditions (Rheinberger and Müller-Wille 2012). Thus, children were understood to inherit their parents’ infirmities through the same constellation of mechanisms through which they would inherit their land, their culture, or their prestige.

While these categories of human biological properties (which we could term reproduction) and legal properties (which we could deem production) remain intimately intertwined today,3 the meaning of heredity has changed considerably. In the contemporary genetic sense, heredity refers to the precise mechanisms and materials that allow for the transmission of genetic information from one generation to the next (Rheinberger and

Müller-Wille 2012). The earliest use of the term in its current sense emerged in Francis

Galton’s 1869 text, Hereditary Genius. Inspired by his cousin, Charles Darwin’s recent work in

Origin of the Species (1859), Galton aimed to challenge environmental understandings of heredity through a theory of biological determinism. It is in this text, and ensuing works by

Galton, that he coined the phrase “nature and nurture,” drawing a distinct, non-equivalent, gendered line between dominant nature and inferior nurture in the work of heredity.

Contrary to previous formulations of heredity, which did not readily distinguish between generation (biological development before birth) and development (biological development after birth), Galton drew an unambiguous line between nature, or heredity (that which are you born with, and which is internal to your body) and nurture, or environment !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 3 Historian Ludmilla Jordanova (1995) demonstrates that the term “reproduction,” as it is understood today to mean biological generation, emerged alongside the political economic concept of “production” in the eighteenth century. See also Silvia Federici (2004)on the importance of women’s unpaid reproductive labor in the emergence and maintenance of wage labor.

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(that which you acquire after birth, and which is external to your body). Within his formulation, Galton saw these two variables as competing, and drew on genealogical analyses of families to argue that natural substance, or heredity, was far more powerful in

“making a man” than all of the trappings of education, finances, food, and whatever else might be added from his external environment. (This was a reversion of the earlier model of heredity, which saw nature as unstable and inconsequential and cultural environment as stable and formative). The very substance of nature (Darwin called them “gemmules” or

“invisible characters” (1868 [1874])) Galton argued, is passed on from parents to children, maintaining biological constancy across generations of a family and largely determining the intellectual and physiological characteristics of individuals.

Galton’s theory of biological determinism attempted to formalize the ancient axiom that “like begets like” and fix the category of human nature through the photographic, phrenological, and statistical study of visible patterns of inheritance. Recent scholarship seems to suggest that Galton may have borrowed his biological theory of likeness from theatre, as Shakespeare juxtaposed nature and nurture in The Tempest (1623) in a scene where

Prospero suggests that Caliban’s brutish nature renders him incapable of being educated: “a born devil, on whose nature / Nurture will never stick.”4 This theatrical rendering of a colonial distinction between nature and nurture both gestures toward the future eugenic uses to which Galton put his biological theory of mimesis, as well as the cultural artifice underpinning this theory of unchanging nature. It is from theatre – the space that

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 4 I came across this connection in an article on Galton written by a mathematician, and then found that historian of science Evelyn Fox Keller describes this practice of tracing nature and nurture back to The Tempest as a recent trend in scholarship. In her account of the phrase, Keller challenges this genealogy, arguing that in Shakespeare’s play, nature and nurture are not rendered in opposition to one another as they are in Galton’s work. Instead, for Shakespeare, “the aim of education is to ‘nurture nature’; a nurture that is set in opposition to nature – directed toward ends that are too alien to a child’s nature – is useless, even meaningless” (Fox-Keller 2010: 18).

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mimetically confuses seeming and being – that Galton seems to have borrowed his theory of the artifice of nurture that can never stick to the unchanging essence of nature. And his use of photography was an attempt to use a mimetic art to establish the natural truth of appearances and to naturalize the appearance of difference.

Documenting and aggregating consistencies in appearance (likeness) would, according to Galton, provide evidence of the stable, innate differences of character, constitution, intellect, and physiology that were maintained in families through the transmission of “invisible characters” of biological substance. In short, for Galton, the empirical study of heredity and appearance would expose that social differences

(employment status, class, mental health) are the product of inborn biological natures. At the time that he sought to prove this, much work was already under way in criminology and physical anthropology to account for hereditary traits based on a horizontal analysis of pre- determined types – criminals, consumptives, engineers, prostitutes, Jews – through standardized physical and statistical measurements of common biological features within each group (such as cranial measurements, descriptions of key physical traits of the face or genitals, and calibrations of non-statistical features such as skin, eye, and hair color). Galton, however, was the first to transform this (apparent) evidence of appearance into a generalized image of a physiognomic “type” (Green 1984) and then to extend this statistics of appearance into the study of heredity (Cowan 1985). His technique: photography.

Galton developed a method of “pictorial statistics,” which combined methods of measurement from anthropometry and statistics with the evidentiary optical apparatus of photography to manufacture one generic likeness that resembled the whole of a type, rather than the idiosyncratic individuals that composed the type. By selecting and layering photographs of several individuals who represented these types, Galton produced composite

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images of their average features. As Galton described the composite portrait in his writing, it is

a generalized picture; one that represents no man in particular, but portrays an imaginary figure possessing the average features of any given group of men. These ideal faces have a surprising air of reality. Nobody who glanced at one of them for the first time, would doubt its being the likeness of a living person, yet, as I have said, it is no such thing; it is the portrait of a type and not of an individual (Galton 1879: 132).

This pictorial statistic – this likeness of a type – was achieved by re-photographing several images of the faces of pre-determined “types” onto the same photographic plate, giving each photograph an equal fraction of the total exposure time (e.g. for thirty images, each image receives 1/30 of the total exposure time). Galton claimed that the resulting composite image, by retaining the features common to the type while blurring out the unique traits of the individuals, could achieve “statistical constancy” after “thirty haphazard pictures of the same class had been combined” (Galton 1883: 7, quoted in Sekula 1986: 47.) In short, Galton believed that his science of “pictorial statistics” could “translate the Gaussian error curve into pictorial form. The symmetrical bell curve [could] now [wear] a human face” (Sekula

1986: 48). Interestingly, the genetic affinities that Galton imaged in his composite photographs did not represent transgenerational inheritance – lines of descent between generations – or kinship in the sense of shared blood. Instead, they were the synchronous capture of similitude – of a set of shared proclivities or practices – within one social historical moment.

It took longer for Galton to bring this imaging practice into the study of lineages because it was difficult for him to access photographs of successive generations of a family.

However, during the late 1880s, George Eastman created the “Kodak,” and with the slogan

“You push the button, we do the rest,” the camera was quickly incorporated into an amateur culture of photography in everyday and domestic spheres (Hirsch 1997: 6). With this

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development, it became much easier for Galton to attain family photographs. In a series of publications, letters, and advertisements between 1882 and 1906 (or later), Galton made requests for amateur and professional photographers to send him individual and group photographs of as many family members as possible. He also encouraged his readership to make a “family custom” of creating family “photographic chronicles,” organized

“methodically in a family register, writing by their side all such chronicles as those that used to find a place on the fly-leaf of the family Bibles of past generations, and much more besides” (Galton 1882: 31). In his earlier letters, he even promised the senders a composite portrait of the “family likeness” in return for submitting their images (Galton 1882b).

These composite family portraits would ideally allow Galton to silence the noise of individual specificity and focus in on the basic physiological traits around which family members “cluster.” This cluster, as evidenced in the portrait’s depiction of the “ideal family likeness,” would be “the assurance of truth” (Galton 1878) that certain traits are transmitted along deep and immutable hereditary lines. For Galton, the likeness – the likeness of a person who has never really existed, but who resembles – is like – a whole line of descent that is “like” a relative, but not in fact related – could be used to reliably predict the future occurrence of like traits. Almost a century later, in his rumination on photography, Roland

Barthes figures the family likeness in similar terms, writing

But more insidious, more penetrating than likeness: the Photograph sometimes makes appear what we never see in a real face (or in a face reflected in a mirror): a genetic feature, the fragment of oneself or of a relative which comes from some ancestor. In a certain photograph, I have my father’s sister’s ‘look.’ The Photograph gives a little truth, on condition that it parcels out the body. But this truth is not the truth of the individual, who remains irreducible; it is the truth of the lineage (1980: 103).

He continues, “The Photograph can reveal (in the chemical sense of the term), but what it reveals is a certain persistence of the species” (105). It is precisely this persistence that

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Galton hoped to parcel by filtering faces through the chemical apparatus of the photograph, layering likeness upon likeness in synchronous time, collapsing the chronological succession of lineages into one static, strangely ahistorical image that would reveal “the truth of a lineage” – that like begets like.

In figures 1 and 2, I include an example of Ludwig Wittgenstein’s genetic family portrait, which he generated based on Galton’s method. The first image is of Wittgenstein and his three sisters, the second image is a composite photograph, or the truth of their lineage. Interestingly, while Galton (and Barthes to a certain extent) saw this genetic likeness as an “assurance of truth” – genetic clarity distilled from phenotypic fuzziness –

Wittgenstein saw the blurred edges of less distinct facial traits ghosting the genetic composite as a very different form of clarity - the “clarity expressed by fuzziness” (Nedo 2011). This

“family resemblance,” for Wittgenstein, was the “picture of a probability,” which did not reveal one common trait in the center, but instead captured a play of possibilities, of overlapping similarities in the indistinct outer edges (Wittgenstein 1953: 66-7). Thus, while likeness was meant as an objective term for Galton – accurately reflecting a common origin, an essential thread of sameness – for Wittgenstein, likeness captured a relation of sameness

– accurately reflecting all of the ways the family are like one another, but are irreducible to one shared essence. The apparent origin of likeness, for Wittgenstein, was its mimetic non- origin, in that likeness is about being related, but not being the same. 5

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 5 It has been widely noted that Gregory Bateson (whose father, William Bateson, was a disciple of Galton’s and played a significant role in the rediscovery of Mendelian genetics) also cites Galton’s composite photography in his 1936 ethnography’s title, Naven: A Survey of the Problems Suggested by a Composite Picture of the Culture of a New Guinea Trobe Drawn from Three Points of View. Bateson was famously uneasy with linear historical narratives, and seemed to draw inspiration from Galton’s practice of creating partially overlapping, temporally collapsed images of historical likenesses. This provides another example of the multiple ways in which “likeness” could be mobilized to radically different genealogical and epistemological ends.

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Figure 1. Four photographs of Ludwig Wittgenstein and his sisters taken by Moritz Nahr c. 1925, Wittgenstein Archive, Cambridge UK.

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Figure 2. Wittgenstein sibling composite portrait of “ideal family likeness” made by Ludwig Wittgenstein and Moritz Nahr, c. 1925. Wittgenstein famously said of this picture that it is “the picture of a probability,” but meant something very different from what Galton intended in his idea of a pictorial statistic. Wittgenstein Archive, Cambridge UK

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Central to my interest in a Wittgensteinian theorization of likeness is the constitutive ambivalence and contradiction that inheres in sameness, particularly as this ambivalence crops up in the techniques and technologies of likeness that have been put to work in making a coherent science of genetic (and cancerous) sameness. Ambivalence adheres in mimesis, making it an enduring and slippery historical sticking point for scholars from Plato

– who fears that theatrical or feminine “seeming” might slip into “being” (see Diamond

1997: vi) – to Homi Bhabha – who sees the “almost but not quite” nature of colonial mimicry as reproducing racial differences (1994). For Galton, likeness captured a singular genetic truth of difference, while for Wittgenstein, likeness captured the fuzziness and fugitivity of truth, offering up a “truth” that is almost, but not quite; it can’t quite be pinned down. I am interested here in the way “like” is able to move between both of these poles of verity. Like is that which is similar to, but is not the same as. To be like is not to be. Or being is precisely what it means not to be in a fixed sense – being emerges in relation to, and through this emergence, “being” is given to appear like - as if - it is. Like lives in the ontological interstices – it is between knowing and being.

To be like, but not to be.

To be. Like. Not to be.

To be like.

To be.

Like.

Not to be.

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Like

(n.) one that is similar (adj.) having the same or similar qualities (prep.) similar to, typical of, comparable or close to - Oxford English Dictionary

Genealogy, as an analysis of descent, is thus situated within the articulation of the body and history. Its task is to expose a body totally imprinted by history and the process of history’s destruction of the body. - Foucault, “Nietzsche, Genealogy, History,” 1971, 83

As part of his eugenic goal of regulating reproduction along genetic lines, Galton extended his study of heredity to defining normal and pathological medical inheritances. He took composite photographs of “healthy” families to generate an image of the normal and robust types, and also took composite photographs of people with chronic, incurable, or congenital conditions such as tuberculosis and cancer, so as to reveal the physiological average of a pathological type. The idea that disease was hereditary – much like property or status – was quite well entrenched by the late nineteenth century. In fact, since the late eighteenth century, hereditary understandings of certain untreatable and chronic illness had become ubiquitous within the medical profession (Adams 1984). This conflation of hereditary and chronicity in the context of disease was not founded upon systemic evaluation of empirical data from family genealogies, as was the case during the rise of classical genetics at the end of the nineteenth century. Instead, the notion of diathesis, or a predisposition to illness, congealed through a different mode of empiricism – doctors marshaled anecdotal evidence and the evidence of experience, which suggested that chronic diseases are given to remain. Any disease that persists through one’s own life course or into

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coming generations of one’s family, it was reasoned, must be so deeply ingrained in one’s biology as to be ineradicable and biologically transmissible.

Diseases that were untreatable at the time such as tuberculosis, gout, cancer, or mental illness were most often labeled as hereditary (Rosenberg 1997). This entanglement of chronicity and biology was supported by the Galenic model of medicine, which understood

“constitution” or temperament as those aspects of character, health, and appearance that remain constant over time – both during one’s lifetime and in the enduring life-course of the family (Waller 2002: 436). Constitution captured unchanging traits such as hair or eye color as well as unchanging illness, such as chronic gout. Constitution also worked within

Larmarckian models of “soft” inheritance, in which acquired traits could become sedimented into fixed biological traits through certain regular environmental exposures and “habits of living” over the course of one’s lifetime (Aronowitz 2007: 67-68). As such, there was no distinction between hereditary disease and infectious disease, such as we might make today, since the main criteria was not mode of transmission, but degree of duration.

If a disease lingered, it was due to heredity – but heredity, in this sense, could be developed and changed over the course of a lifetime through consistent environmental exposures or unhealthy habits (this is a key principle of Lamarckism). Thus, one could have inherited a constitution that predisposed him or her to disease, which would become manifest if a combination of external stimuli irritated and awoke the deadly hibernating disease. Alternately, if consistently exposed to certain aggravating stimuli, one’s constitution might permanently change such that one’s disease became incurable and was then passed on as a predisposition to one’s children. (An example of this particular formulation of intransigent and acquired heredity would be doctors’ assertions that a major factor in causing breast cancer was the persistent practice of wearing a tightly laced corset or the “bad”

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feminine habit of having perpetual attacks of nerves). Of course, it is unclear if the practice makes heredity sui generis or activates dormant heredity in this model (Aronowitz 2007: 298).

Such a flexible formulation of nature-nurture interplay made it possible to account for the fact that children often did not develop the same hereditary diseases as their parents. The term doctors developed to account for this inconsistency was “predisposition.” This term was defined as the condition of having the potential to develop chronic illness when exposed to certain environmental stimuli (Waller 2002: 420).

During the first half of the nineteenth century, the medical trend of making chronic disease a problem of inheritance (acquired from birth or through life according to habit or predisposition) was reinforced and stabilized through a mimetic chain of operations.

Doctors diagnosed patients with hereditary disease or hereditary disease potential based on the likeness of chronic illness to an unchanging biological constitution. As historian of medicine, John Waller argues, by situating the inability to treat a disease in the stubborn and stable constitution of the inveterately ill individual and their extended family, doctors were able to deflect accountability for the failure to eradicate the disease away from any inadequacies in the treatment regime (ibid). Drawing on this disease model of likeness, hospitals and insurers then began refusing to take on patients manifesting the symptoms of chronic disease, as well as their families, in whom the illness was lurking without visible signs

(425).

This closed loop of diagnosis and discrimination helped to solidify a link between heredity and diseases such as cancer, and had enduring effects on patterns of treatment.

Because of the discrimination, stigma, and fear of imminent death that attended having an incurable illness, many patients became reluctant to seek treatment for a disease that they suspected was hereditary and therefore incurable, or they began fudging family histories

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when they did seek treatment to circumvent insurance and treatment barriers. Into the twentieth century, this trend continued to haunt the study of the hereditary nature of some diseases because of a paucity of empirical evidence and a persistence of stigma, while at the same time, these loose hereditary understandings of disease also laid the groundwork for early eugenicists and geneticists to draw links between the visible manifestation of traits

(such as cancer or mental illness) and Mendelian modes of genetic transmission across generations.

During the mid to late nineteenth century, social and medical scientists began to submit these patterns of inheritance to more regular empirical scrutiny through the construction of family pedigrees. Flexible, non-standardized pedigrees had been in existence since at least the Middle Ages, however they were largely employed in the interpretation of property inheritance. Because these maps of relation were meant to chart succession in terms of power and property, they often excluded female relatives and were not ordered based on closeness of biological relation (i.e. first- or second- degree relative) or linear lines of descent, but instead were modified based on conferment of entitlements (Rheinberger and Müller-

Wille 2012: 117). A growing interest in evolutionary models of development and difference, however, motivated anthropologists and physicians to standardize and universalize the study of kinship, thereby shifting some of the meanings of inheritance and relation from managing property to regulating reproduction. In 1871, American lawyer turned anthropologist Lewis

Henry Morgan developed a basic, generalizable, linear system for mapping kin relations based on elementary relationships from basic (my mother) to complex (my mother’s mother’s mother’s mother’s daughter). Morgan saw kinship studies as offering invaluable insights into the stages of evolution, as well as making visible the mechanisms of cultural reproduction at the level of society. At the same time, physicians and researchers such as

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Galton were beginning to show interest in the mechanisms of biological reproduction at the level of the population. 6

Pedigrees became a key technology in the process of stabilizing likeness into a hierarchized, linearized scientific study of biological inheritance. In the area of hereditary disease, Paul Broca – a French surgeon, pathologist, and anatomist who was a pioneer in the racist science of anthropometry and the in-law of a family riddled with breast cancer – was particularly well-positioned to begin applying the emergent science of pedigree analysis to breast cancer research. In 1866 – the same year that Gregor Mendel published his important paper on genetic patterns of inheritance, “Experiments in Plant Hybrization” – Broca published the first volume of Traité des Tumeurs. Nestled alongside his then-radical claim that cancer cells descend from normal cells in the body was a detailed pedigree and analysis of his wife Adele Augustine Lugol’s family, which was plagued by cancerous recurrences. A family pedigree in the volume illustrates that ten out of twenty-four women in Lugol’s family had died of breast cancer, while many others had died of “gastrointestinal tumors” (which could also be ovarian cancer) over five generations between 1788 and 1856 (figure 3). Bringing together anecdotal evidence of earlier physicians with the empirical data of his own family’s detailed pedigree, Broca suggested that the “excess” of primary cancers and high rates of recurrence among his in-laws could be attributed to diathesis, or a hereditary predisposition to disease:

Whatever the name one wishes to call it, this deadly predisposition, impossible to foretell, impossible to escape, inaccessible to surgery, and until now even inaccessible to internal or medical treatment, is an indication of a general state which precedes !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 6 In his lectures from “Society Must Be Defended,” Michel Foucault notes the rise of various regulatory institutions and technologies that brought biological life under state control through the modulation of individual bodies at the level of anatomy and the measurement of biological life at the level of population. Within this emergent regime of biopower, marked by the power to make live and let die, Foucault suggests that racism emerged as a key mechanism, which enabled the function of death in a system built on sustaining life (1976).

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each local manifestation, which persists after surgery, and which determines a recurrence in the same way that it produces the first tumor. When one looks beyond, in certain cases this predisposition transmits itself by heredity through several generations […] [A] person in which are assembled unknown conditions, which expose him to later become cancerous, can transmit to his posterity this group of conditions before they have been manifested themselves in him. Also, having received the diathesis from one of his forebears, he may escape, during a long and healthy life, the consequences of that hereditary state, and may pass on to his children the disease from which he was spared (Broca 1866, quoted in Krush 1979: 126-7).

Figure 3. Paul Broca’s wife, Adele Augustine Lugol’s family cancer pedigree, published in Traité des Tumeurs (1866). Translation courtesy of Anne Krush (1979).

Broca’s account illustrates a shifting understanding of heredity from biological constitution to genetic determinism. In Broca’s analysis of a deadly disease predisposition that afflicts his wife’s family, he diagnoses both healthy and sick family members with a cancerous precondition – malicious, unlocalizable, unpredictable disease potential, replicating itself across generations. Broca draws on the available language of diathesis and predisposition, but employs them within a model of inheritance that is markedly less flexible and more fixed than those from the earlier half of the century. Specifically, he moves from

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accounting for a variety of stimuli or behaviors that could shape one’s constitution (nature- nurture interplay) to a more reductive and deterministic mode of inheritance based on the biological transmission of singular traits (nature dominates). This is further illustrated by

Broca’s use of the word “atavism” to account for those few family members who carry and pass on the disease predisposition, but do not manifest it as disease in their lifetimes. While the earlier description of this phenomenon used the language of a predisposition, which was triggered by environmental or behavioral stimuli, atavism is a reversion to an earlier genetic type (in the evolutionary sense). For example, a vestigial tail is an example of atavism. This tail is manifested through the reactivation of genetic substance after it has lain dormant for generations.7

However, Broca’s research was poised uneasily on the precipice of an epistemic transition in cancer research and treatment. The growing field of cancer pathology – the diagnosis and study of the disease, including its causes, mechanisms of development, and clinical manifestation – was moving away from hereditary understandings of the disease as advances in the microscopic study of cells were leading to a more materialist understanding of malignancy and metastasis. In 1887, British surgeon and pathologist James Paget lamented that the actual substance of cancerous inheritance

[…] is so mysterious; it is so utterly impossible to conceive the form of the material in which the impregnated ovum contains that which will become or be made cancerous, that it cannot be safe or useful to think that we can deduce anything from

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 7 Broca’s account demonstrates the ways in which genetic understandings of heredity emerged at the interstices of anthropology and biology. For example, atavism, as a hereditary concept, took shape at this time in relation to the hierarchical ordering of biological traits and a linearization of evolutionary models that figured the human races as moving forward from primitivism to civilization at different rates. In anthropology, this term captured cultural and biological primitivism in the manifestation of certain behaviors or physical traits, in order to suggest that some races had not yet fully evolved and were therefore inferior. In biology, this term was used to capture the genetic tendency to revert to earlier evolutionary types – visibly manifesting certain outmoded traits that have not appeared for generations. In this way, atavism was a form a temporal disorder in the forward march of progress – it was a return to a past that was backward, degenerate, and, in the case of cancer, fatal.

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the bare fact. We are apt to speak of potentiality, tendency and predisposition as if they were forces independent of matter or structure; but when we try to think of the very things on which they depend, we find ourselves in a cloud-land of mystery, where the difficulty of discovering truth is as great as the facility of guessing (Aronowitz 2007: 68).

For medical doctors and pioneers in cancer pathology like James Paget and Rudolf Virchow, the visible manifestation of genetic likeness was of little medical value for understanding what lurked beneath the surface contributing to the onset of a fatal disease. By studying tumors under a microscope to understand their mechanisms of generation and production, it was thought, pathologists could acquire a better understanding of the material underpinnings of cancerous growth rather than that elusive thing of cancerous inheritance. Their research into likeness was moving to a microscopic scale – at the level of cellular generation – rather than the phenotypic scale – the level of cancer’s visible manifestion. This research began to transform the practices and tenses of diagnosis and treatment, as cancer became a disease of cellular abnormality.

Like

(adv.) likely, probably, approximately (conj.) as if - Oxford English Dictionary

Broca, Paget, and Virchow were researching cancer in a moment when the majority of patients being diagnosed and treated for cancer were already in the late stages of the disease, appearing in the clinic with highly visible, debilitating, and largely untreatable symptoms such as large leaking abscesses or a breast that was so deteriorated that it looked as if it had been “eaten by a crab” (Löwy 2010: 25). In a culture that relied heavily on reading

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the visible signs of cancer as they were inscribed on the patient’s body as anatomical anomaly – exterior lesion or interior tumor (these were generally female patients because the most prevalent known tumor sites were the breast and the uterus) (Aronowitz 2007: 68) – the microscope was quite peripheral to the diagnosis of cancer. Yet, as a cellular theory of cancer became more widely accepted around the turn of the century through Virchow’s research, microscopic pathology gained traction as a valid and valuable mode of seeing the unseen and accessing the unknown, particularly as it related to the origins of pathological growth in normal cells. These possibilities of vision, according to Broca, were foreclosed in the focus on solely anatomical features of cancer:

Is there in the stricken organ or in the whole organism something at work which precedes its appearance? Anatomy has found nothing so far, and it even seems probable to me that anatomy will always be silent on this point (Schiller 1992: 65).

This something that precedes anatomical appearance could, for Broca, be rendered apparent through the powers of cellular magnification.

Through the microscopic study of noncancerous and cancerous tissues, Virchow

(and later Broca) suggested that all cells do not arise spontaneously, as had been previously thought. Instead, cells emerge from the growth and division of other cells. In 1855, Virchow confidently repeated as fact what Francois-Vincent Raspail had asserted as speculation in

1826:

I believe that the time is not far away when this scientific challenge will no longer sound fantastic or over-confident: Give me a cell within which other cells can be formed – and I shall hand you the organized world: every cell comes from a cell; omnis cellula a cellula” (Schiller 1992: 64).

Cell begets cell. Like begets like. But likeness is not sameness. Almost, but not quite.

Virchow’s insights into cellular reproduction made cancer cells a particularly ideal and horrifying object of cellular study and cultural analogy, as they were capable of

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reproducing at unparalleled rates to produce unparalleled forms (the wonders and horrors of unchecked mimesis). In the case of cancer, cells beget cells, but the repetition fails to produce sameness; instead it mutates, producing monstrous variation in the act of replication. According to Broca,

In cancer, and in cancer only, we are able to find all the various kinds of elementary vesicles that exist in the series of organized beings. All imaginable types, every possible mode of production, […] exist together or separate in this pathological tissue: such is its power of increase and reproduction. If it is true that monsters often are degraded organisms in which some of their parts repeat features and dispositions of types belonging to a lower rung of the ladder, one may say without exaggeration that cancer is a pathological monstrosity (Schiller 1992: 65).

For Broca, cancer’s monstrosity seemed to reside in its biological promiscuity. At the cellular level, cancer defied evolution’s temporal boundaries between the primitive and civilized that

Broca and other physical anthropologists had worked so painstakingly to solidify; it reproduced with reckless, undisciplined abandon, breaching the boundaries of organs through metastasis in a moment when unregulated reproduction and inter-racial breeding were a matter of deep and abiding concern social and economic concern. Cancer was a mimetic scourge that must be reigned in. The task became figuring out exactly how and when a normal cell’s reproduction took on monstrous proportions, in order to arrest the ghastly aggregation of mutated cells.8

Broca’s pathological research supported recent findings, amassed from microscopically studying tissue from patients who died from cancer, that cancer emerges through local cellular mutations in one site that then spread into other regions of the body.

This conception of cancer cells was more localized and mechanistic than the hereditary !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 8 It was popular knowledge at the time that cancer was a disease of civilization and a disease of gender; and therefore, on some level, the metaphors surrounding the disease are ripe for cultural analysis. Both the metaphors of uncontained race and unchecked reproduction were marshaled to enable aggressive treatments of all suspicious cellular growth that threatened to breach the boundaries of organs and metastasize (Aronowitz 2007).

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models of cancer that drew on the Galenic tradition’s notions of reciprocity, sympathy, humors, constitution, and disease as a cumulative sum of bodily experience over time

(Aronowitz 2007: 61). This cellular model of cancer altered the temporal constitution of cancer – medical practitioners were increasingly moving away from a model of latent and chronic disease, and toward a linear and progressive narrative of disease development. This meant that if cancer was caught in the time frame before it started to spread and was removed in a timely manner, a patient might survive.

By the turn of the century, physicians had begun to realize that the only way for women (because it was generally understood to be a women’s disease) to survive cancer was to diagnose the cellular monstrosity before the outward anatomical signs were manifest. This would be possible by excising and imaging potentially cancerous tissue under a microscope.9

Of course, this proved a bit troublesome because no one could quite figure out when exactly cells became cancerous. There were no uniform observable criteria for determining a clear difference between a benign tumor and one that might become malignant. Second, since cancerous growth tended to precede the onset of symptoms, there was a great deal of uncertainty around when it was necessary to remove the organs and when it was possible to wait and see if a tumor progressed. As a result, doctors erred on the side of treating all abnormal growths patterns as precancerous conditions. If the excised tissue revealed a

“family resemblance” to pathological cellular growth, the organ in which it was situated would be surgically removed to treat the cancer that might or might not be developing. As a result of these changes, the focus on cancer shifted from attempting to manage incurable !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 9 In a 1913 report, Joseph Colt Bloodgood reported that only 25 percent of women who presented with clinically visible symptoms of breast cancer survived for 5 years after a radical Halsted mastectomy. Conversely, 80 percent of women without visible signs whose tumors were discovered during surgery survived up to five years after mastectomy. Text of 1913 speech by Bloodgood.“Control of Cancer,” Prevention of Cancer Series, AMA leaflet no. 7. Cited in Löwy 2007: 25.

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hereditary constitutions to imaging and intervening in potentially curable cellular preconditions. Cancer became a different kind of disease – one marked not by visible, lived symptoms, but by the magnification of often-unfelt cellular patterns of unchecked growth.

Instead of being a disease of family likeness, it became a disease of cellular likeness to disease.

That is, if the cells looked like – as if – they might likely become cancer, then they were treated like – as if – they already were cancer. Like begets like. If it is like the disease, then it must be the disease.

Between the 1910s and 1920s, Joseph Colt Bloodgood, a major breast cancer researcher at Johns Hopkins University and long-time collaborator of William Halsted

(creator of the infamously debilitating Halsted mastectomy), wrote that, by examining a sample of breast tissue under the microscope, a pathologist had the ability to locate “a pre- existing local defect which is benign and in which later there may be a cancerous development” (1914: 162). This claim demonstrates the slippage between cancer and not- cancer, as breast cancer surgeons and researchers in US and Europe followed Bloodgood in turning to the microscope as the key to locating lesions in breast tissue samples that were often in the nascent stages of malignancy, and ideally on the border between benign and malignant (Ewing 1913-14). Benign or borderline precancerous cases, which might become cancerous, were treated by mastectomy. This practice of removing the breast with to treat a cancer that was not yet cancer was advocated by doctors well into the 1960s and 1970s as they argued that “what will be, is” (Lewison 1964, quoted in Lerner 198) so it is best “to cure today what tomorrow may be incurable” (Black 1970, quoted in Lerner 198). Indeed, for some doctors, having breasts was itself considered a premalignant condition, as the

“feminine mystique” (Lewison 1964) of women’s reproductive organs made them particularly mysterious, unmanageable, and susceptible to cancer’s uncontrolled cell growth.

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As the pathological study of cancer ushered in the era of “earlier than early” treatment of borderline and precancerous conditions, genetic theories of cancer were actively marginalized. Hereditary cancer became an unpopular idea among medical researchers and practitioners in the early-to mid-twentieth century. This was largely because the fixedness, incurability, and stigma attached to hereditary models of the disease were at odds with the rise of anticipatory research and treatment agendas that promoted early detection and successful treatment of “precancerous” conditions. Experts felt the need to wean the public off of an orientation to hereditary models of chronicity and incurability that, as medical historian David Cantor puts it, “promoted either complacency of paralytic fear” that caused individuals to delay seeking help for their condition (2006: 280).

This shifting clinical attitude is exemplified in the influential 1913 publication Control of a Scourge, written by British surgeon Charles Childe, and widely read in the US and UK. In the text, he asserts, “Cancer is not incurable. It becomes incurable from the simple fact that its unfortunate victims harbour and nurse their cancers till it is too late” (1906: 143-144, quoted in Aronowitz 2007: 145). For Childe, a range of reasons contributed to this delay in seeking treatment – mainly the fear of surgery (radical surgery often without consent was the most common technique for cancer treatment and the diagnostic threshold for surgery was low – for most surgeons, even a suspicion of cancer was sufficient cause for intervention), pessimism about survival on the part of patients and family physicians (few had seen anyone survive cancer, even with surgery), and the stigma attached to cancer due to (unfounded, according to Childe) hereditary understandings of the disease (Aronowitz 2007: 145-151).

The American Cancer Society for the Control of Cancer (to later become the

American Cancer Society) was founded in 1913 to disseminate the message “do not delay” in seeking treatment for possible cancerous signs or symptoms (ibid). Educational campaigns

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were particularly important during this period before the rise of regular breast cancer screening programs through mammography. This was because cancer was almost always detected first by women, rather than by their physicians. The task, then, was to convince women that they should seek treatment for possible cancerous symptoms earlier, rather than later.

In his excellent account of the “do not delay” campaign that lasted from the 1910s into the late 1960s, physician and historian Robert Aronowitz suggests that time emerged as a central organizing trope in popular and scientific discourses around cancer. The ACSCC produced educational pamphlets, films, and dioramas demonstrating the great moral and mortal hazards of waiting too long to bring suspicious symptoms to the attention of an expert. These campaigns were largely targeted toward women and focused on breast cancer.

For example, a 1920 campaign diorama depicted two scenes: in the first “right” scenario, the woman seeks early treatment for a suspicious lump in her breast and is cured by her doctor

(although they fail to say if the “cure” was a radical mastectomy without consent), while in the second “wrong” scenario, the woman delays a visit to the doctor, ends up with incurable cancer, and is shown pleading with the bank to give her a loan to help her take care of her children (this is particularly bleak, since presumably the bank won’t give credit to a dying woman who doesn’t have a future in which to pay back her debt). Campaign videos urged women “Choose to Live” (1930’s) and “Time Is Life” (1950s-1960s) (Aronowitz 2007: 159); while posters compared cancer to a forest fire, insisting “As with a Fire, So with Cancer!

Prompt and efficient action is necessary to prevent spreading and final Destruction!” (165).

As Aronowitz convincingly argues, these campaigns attempted to decouple fear of cancer from hereditary ideas of its incurability, while mobilizing women’s fear of disappointing their

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families or dying an untimely death to get them to take personal responsibility for seeking out a surgical cure before the disease progressed.10

While these campaigns proved to be quite effective in instilling public belief in the perilous temporal constitution of cancer and the fatal fallacy of hereditary cancer, hereditary discourses began to flourish in other areas of disease research. With the rise of Mendelian genetics in the early 1900s, researchers began combining careful analysis of visible and statistical patterns of trait inheritance through pedigrees and the cytological study of cells under the microscope to determine the precise material mechanisms at work in copying and transmitting genetic likeness across generations. In the final section, I examine how a few medical researchers and families worked at the fringes of genetics and oncology, coordinating lay and medical understandings of genetic likeness, cancerous reproduction, and precancerous conditions to develop a hereditary theory of cancer.

Like adv. nearly, closely adv. as it were, just as adv. to a degree, more or less -Oxford English Dictionary

In Ann Arbor, Michigan during the 1890s, cancer pathologist Aldred Warthin’s seamstress told him that she would almost certainly die an early death of colon or ovarian

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 10 As Aronowitz (2007) demonstrates, the “do not delay” campaigns placed a good deal of moral responsibility on women to protect their health, and often drew on middle-class domestic and gendered metaphors to do so. In the 1930s and 40s cancer awareness campaigns drew mechanistic parallels between the timeliness of proper lawn care or plumbing repair and the timely care of the body. In the 1950s, public service films drew on women’s sense of marital and maternal responsibility, featuring women choosing not to delay in fulfilling their duties to their families by getting early cancer detection. Many ads and reports through the 1960s scolded women for being ignorant, narcissistic, or self-destructive by failing to take care of their cancer “in time,” while at the same time, the medical profession relied heavily on women’s intimate bodily knowledge to read for the early signs of cancer – lumps, bleeding, swelling – in order to realize early treatment goals.

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cancer “because everyone in my family died of these diseases” (Lynch et al 2007: 261-3).

Over the next few decades, Warthin worked with her to determine if they could prove that cancer is a heritable trait like eye color or dwarfism. Drawing on her intimate knowledge of the family disease history and supplementing it with medical records and surgical reports,11

Warthin developed a detailed pedigree of “Family G.” In 1913, Warthin published a statistical study of three generations of the seamstress’s family in which seventeen out of forty-eight descendants of a cancerous grandfather also developed cancer (Fig. 4). Such a marked pattern of cancers led Warthin to dub Family G a “cancer family” (1913), as he drew on emergent Mendelian ideas of inheritance to suggest “these findings suggest strongly the occurrence of a recessive family susceptibility to the development of cancer” (1925: 286).12

Figure 4. “Family G” pedigree republished in Warthin 1925 from original 1913 publication. !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 11 In a later publication on this research, Warthin expresses his gratitude for the young woman’s rigorous genealogical account, writing that he had “an unusual opportunity of obtaining accurate information concerning the various lines of descent in this family from an intelligent and cooperative member of the family, who, unfortunately, fell a victim herself to a rapidly-developing carcinoma of the uterus” (Warthin 1925: 280). 12 Creating pedigrees remains one of the main tools employed in medical genetics to diagnose disease risk (c.f. Nukaga and Cambrosio 1997).

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In a 1925 publication related to further research on the cancer family, Warthin remarks on the negative response of the medical field to the findings from his 1913 study, saying that

it met little favor among surgical writers and particularly among those interested in propaganda for the prevention of cancer [who claimed] there was no evidence for the existence of a familial susceptibility to cancer (1925: 282).

Warthin’s 1913 study of Family G was disqualified by his contemporaries as inadequate, errant, and even dangerous for perpetuating beliefs in the hereditary nature of cancer. By working to legitimate narratives of heredity, they feared, Warthin could deter populations from taking “responsibility” for their health and seeking early diagnosis and treatment of pre/cancer by contributing to the fear and fatalism that attached itself to hereditary understandings of the disease. When Warthin was researching Family G, the belief that cancer can run in families was rendered imperceptible by the dominant epistemic schema of precancer. The combination of cancer pathology and patient education campaigns had forcefully foreclosed the possibility of registering as true or valid the lived experience of hereditary cancer that had only decades before been considered a norm. Any system of knowing operates through exclusions, and emerges in unequal exchanges, structures, histories, practices, and forces, which shape what (and who) gets incorporated and what (and who) gets disqualified within a given regime of truth. Even though Warthin and the seamstress mapped her diseased relations through the dominant pedigree technologies for tracing likeness at the time, neither the “folk” knowledge of the seamstress nor the “fringe” science of the pathologist was rendered legible as plausible or trustworthy within major medical paradigms or popular forums of their day.

The seamstress died an early death of uterine cancer, as she had divined, and Warthin colored her circle in the pedigree black.

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It wasn’t until the 1960s that another doctor took up the study of “cancer families.”

By this time, genetic understandings of illness had become more widely accepted and studied, though the research into heredity was still generally relegated to the margins of cancer research partly because the populations were very small who had a significant number of cancerous relatives and partly because the “do not delay” campaigns had largely snuffed out any whiff of a connection between heredity and cancer. In the early 1960s, Henry Lynch had completed a PhD in human genetics and was faculty at MD Anderson Hospital and

Tumor Institute in Texas when he began to notice how certain families seemed to have multiple close relatives developing and dying from the same cancers, or similar clusters of cancer (such a breast and ovarian cancer, or colon and endometrial cancer). Some of the patients from these families described themselves as “cancerphobes,” who dreaded developing the disease that they felt was inevitable (Lynch et al 1978). In 1961, Lynch collaborated with social worker Anne Krush to organize a “medical genetics research team” to work on the clinical application of genetic science in these families (Lynch et al 1964).

Lynch imagined that greater knowledge of the genetic links to cancer would allow him to incorporate heredity into the dominant precancer schema and treat family risk as a precancerous condition.

Lynch and his team moved to the University of Creighton in Nebraska in the mid-

1960s and began to work closely with large Midwestern cancer families, whose lived and archived expertise of their cancerous inheritances served as a crucial resource to the burgeoning field of medical genetics. Lynch worked with cancer patients and their family members to cobble together their knowledge of family disease, drawing upon diverse resources such as personal memory, collective narrative, and various genealogical records

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including family bibles, photographs, and diaries in order to construct family pedigrees.13 In a

1965 publication on the possible links between cancer and heredity, Lynch and his research team describe their collaboration with a large Nebraska family, many of whom “showed missionary zeal to assist the investigators” (Krush et al 1965: 434). While the family was not knowledgeable about the general principles of classical genetics, according to Lynch, they

“were particularly knowledgeable concerning the incidence and transmission of cancer in their family” (ibid, emphasis in original). Lynch notes that one female member in particular acted as “an excellent liaison between the genetics team and the family,” collecting names and medical questionnaires and making introductions, and turned the collective data gathering visits to the hospital into a “reunion” of sorts (433-4). The genealogical and medical data acquired from these various genealogical materials was both supplemented by and checked against medical records, pathology reports, and census data (Lynch et al 1964).

In her memoir, Amy Boesky describes her family’s own experience as a cancer research family, as her father corresponded regularly with geneticists at Creighton University in Nebraska (almost certainly Lynch and his team) regarding his wife’s cancerous lineage beginning in late 1970s and early 1980s:

Every so often the researchers at Creighton University mailed us diagrams, each woman in our family represented by a small circle. The ones who’d died from ovarian cancer had their circles colored in black (2010: 28).

When Boesky’s cousin Gail developed stage 4 ovarian cancer in 1983 and later died in 1985, she recalls,

In the spring of 1985, they colored in one for Gail. The diagram looked grim, like the models of molecules we used to build in high school chemistry. Ours had way too many black circles in it – long life looked like a trait we hadn’t been lucky enough to inherit (29-30).

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 13 For more on the use of various forms of memory and material culture in the construction of family disease pedigrees, see Susan Lindee. 2005. Moments of Truth in Genetic Medicine.

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Circles for women, squares for men. Clear for cancer-free, striped for cancerous, black for deceased from cancer. Numbers beneath the circles denote age at cancer diagnosis and death. Lines running between the circles and squares link generations, a “long, fated chain” following the regeneration of cancer in the family. Pedigrees require a particular kind of knowledgeable looking – an ability to decipher the semiotics of colored circles and lines.

This gaze emerges not through instruction, but through collaboration. Indeed, this set of exchanges between husband and wife, mother and daughters, researchers and family stands out in Boesky’s memoir as a particularly powerful feedback loop of knowing and unknowing, as their diverse knowledges of likeness – family resemblances, cancerous recurrence, tumor pathology – worked in tandem to coordinate a medical diagnosis of their cancerous sameness. Her heredity, it seemed to her and her family, was a premalignant condition – one that was already present, though latent, quietly threatening to metastasize and consume her and her sisters like it had her other relatives. Like the photographs of her deceased female relatives lining her upstairs hallway, the circles and dots on the family pedigree linked her inexorably to a similar fate through an insistent likeness. The closer her own white circle was to black and striped circles and squares on the pedigree, the more tightly intertwined her biology was with theirs, the more like she was to her relations.

According to the patterns of likeness in the pedigree, the more close (first and second degree) relatives she had with breast or ovarian cancer, the greater her risk of developing the same disease. 14

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 14 After Lynch had moved to the University of Creighton in Nebraska, his colleague from MD Anderson Cancer Center in Texas, Dr. David Anderson, began to undertake similar genealogical studies of cancer families. In one study, he focused on 500 women (out of 6550 whom he had treated for breast cancer between 1944 and 1969) who had informed him that they had relatives with breast cancer. Anderson’s analysis found that a woman’s risk of developing breast cancer increased in relation to the number of her close (first-degree) relatives who had also developed the disease. If a

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In her analysis of scientific texts and unpublished research notes from geneticists between 1955 and 1975, historian of science Susan Lindee finds that

[K]nowledge generated by people who were not technically trained was […] a familiar, usable, and productive type of information [in genetics], acquired first-hand by persons who had plausible and perhaps trustworthy reasons for their conclusions” (2005: 4).

She claims this “patchwork quality of knowing” (2) characterized the movement of multiple knowledges about hereditary disease across epistemological boundaries in the production of genetic science. Nowhere is this more evident than in the pedigree which “seamlessly blends folk, emotional, social, and technical knowledge, compacting multiple perspectives into a single image and text” (62). In this way, Lindee writes “folk knowledge can and does move into technical knowledge without undercutting the legitimacy of the technical” (25).

By the early 1970s, this ongoing exchange of folk, emotional, social, and technical knowledges among patients, family members, and researchers led Lynch and Krush to make medical recommendations for the surgical prevention and treatment of a condition they called “cancer family syndrome” (1971). Relative pathology – as both hereditary disease and affective dis-ease about cancer’s persistent returns – in cancer families began to cohere into a concrete model of cancerous sameness that could be surgically treated. Boesky vividly recounts being caught in this emergent affective tangle of diseased relation and surgical intervention during her childhood:

[My father] haunted [my mother] with articles gleaned from the geneticists at Creighton, urging her to have a hysterectomy from so early on I can remember no time when the word ovary wasn’t linked for me to a sense of doom and inexplicable grief. Long before we’d gotten our periods for the first time, [my sisters and I] had been catechized: Grow up; have children fast; and get those things out of you (2010: 26-7).

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! woman had two close relatives with breast cancer, her risk increased significantly. Anderson, David E. 1972. “A genetic study of human breast cancer.” Journal of the National Cancer Institute, 48: 1029-34.

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The medical genetics research team at Creighton offered genetic counseling to sick and healthy family members and would determine disease risk based on one’s relative position to disease in the family pedigree and on one’s affective stance to disease. From a technical standpoint, if there were multiple first- and second-degree relatives with breast and/or ovarian cancers in an individual’s pedigree, they suggested prophylactic mastectomy and/or oophorectomy as a viable therapeutic option for sick and healthy patients alike (Lynch and

Krush 1971). From an affective perspective, the researchers also suggested preventive removal of organs and tissues in healthy patients who were convinced they would otherwise develop the familial disease:

Prophylactic mastectomy may be considered (in such families) under certain circumstances. For example, a relative […] who developed a crippling cancer phobia because of her awareness of this disease in her family may express a strong desire to have what she correctly considers her cancer-prone breast tissue removed” (ibid).

Other preventive mastectomy candidates were “those who failed to comply with screening recommendations, often because of their fear of ‘finding’ breast cancer” (Lynch 1969).

The work of genetic diagnosis was moving into a more collaborative space in which patients and physicians began to coordinate multiple understandings of likeness into a treatment model of cancerous inheritance. Cancer risk began to take on other dimensions, such that the healthy patient’s fear of developing cancer – her intense affective experience of dis-ease – became sufficient diagnostic criteria for treating the disease of cancer that she did not yet have. It is worth noting that all disease can be defined as a relational state marked by a deviation from normalcy, health, or function in the body of an individual.15 Here, this relational meaning of disease is doubled, as the disease emerges in the context of mutated genetic relations, which generate a dis-ease of affinity and enable the preemptive treatment !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 15 For a detailed historical and etymological reading of diagnosis as an art of naming difference or deviation from a species norm, see Evelyn Fox Keller. 2010. The Mirage of a Space Between Nature and Nurture. Durham: Duke University Press. 45-6.

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of a disease of likeness. That is, affect and relation come to the fore as central techniques and technologies of diagnosing and treating heredity as a precancerous condition.

What is particularly notable about Lynch’s research and his surgical recommendations is the way in which they point to an emphasis on more agential and affective dimensions of diagnosis and treatment, as families and women, in particular, began to participate more actively in technoscientific projects of bodily knowledge and intervention. In the decades leading up to Lynch’s work with cancer families, surgical interventions into precancerous conditions had relied heavily on the pathologist’s expertise in reading the microscopic signs of cellular mutation and on the surgeon’s decision to remove potentially dangerous tissues, often without a woman’s consent. However, developments in medical genetics – a diagnostic field marked by uncertainty, patchwork knowledge, and speculation – were unfolding in tandem with a growing women’s health movement, as women were beginning to seize on the technical tools of science and medicine in their own political projects of self-fashioning, counter-conduct, and lay expertise (Murphy

2012). Historian of science Michelle Murphy has developed a compelling genealogy of the uneven unfolding of the feminist self-help movement of the 1970s, charting women’s appropriations of and entanglements with technoscientific transformations during this period. She writes that feminism was an essentially biopolitical project at the time, as the means of caring for, understanding, and altering their bodies with technoscience formed the basis for the feminist liberation projects of certain women in the US (10). One crucial tactic, according to Murphy, was the tactical elevation of affect and embodiment – capacities “to feel, to sense, and to be embodied” – as epistemic virtues through practices of self- examination and self-care (72).

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This shifting epistemological field of affect, relation, and prevention in cancer genetics, specifically and feminist technoscience more generally, was deeply entangled with a broader set of political, economic, and social transformations that were unfolding in and around the life sciences in the late 1960s and 1970s. It is to this broader set of relations that I turn in the following chapter in which I trace the multiple histories and practices that are diffracted through the discovery of the BRCA genes.

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CHAPTER TWO

The Performance of DNA: CopyCodeCapitalCopyCodeCapitalCopyCodeCapital CodeCapitalCopyCodeCapitalCopyCodeCapitalCopy CopyCodeCapitalCopyCodeCapitalCopyCodeCapital CodeCapitalCopyCodeCapitalCopyCodeCapitalCopy

I am sitting in a quaint, musty cinema in a Philadelphia suburb in the fall of 2013, in attendance at a small screening of a film, Decoding Annie Parker. The film, which boasts an all- star cast including Helen Hunt and Aaron Paul from Breaking Bad, depicts the decades leading up to the discovery of the BRCA1 gene from the perspective of a major American geneticist – Mary-Claire King – and a woman whose life was defined her family’s recurrent history of breast cancer – Annie Parker. As part of an initiative that the filmmakers have branded “filmanthropy,” the director and Annie Parker are touring the US, doing intimate screenings with talk-backs in an effort to “foster a mutually beneficial partnership” between the filmmakers and cancer organizations (“About the Film” 2013). In short, the screening is being used to raise funds for the film’s production, while also increasing awareness and sponsorship of the cause of genetic breast and ovarian cancer risk. The screening event is co-sponsored by a patient support group for hereditary breast and ovarian cancer, FORCE

(Facing Our Risk for Cancer Empowered), in addition to two major cancer research hospitals, a boutique biotech company named Ambry Genetics, and a few local businesses.

There is a red carpet and a space where the people attending the screening can get their photos taken with Annie Parker as if they are at a Hollywood premiere.

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The house is packed with doctors and researchers from Philadelphia’s Fox Chase

Cancer Center and Penn Medicine’s Basser Research Center for BRCA, as well as women who appear to be pairs of parents and daughters, couples, sisters, and friends ranging in age from their late teens to their late seventies. As we wait for the film to start, many of the women stand in the aisles. Some chat about the logistics of their local patient advocacy group’s activities, some wave down their doctors from across the room. I overhear others ask after loved ones and family members. Mundane questions about children’s soccer games and more difficult questions about cancer prognoses or preventive surgeries intersect in the room’s hushed cacophony of chatter.

An impeccably dressed older woman sitting next to me has come with her daughter.

They both carry the BRCA2 gene, she immediately offers. She is warm and open and matter of fact. She tells me how pleased and surprised she is to see a few men in the audience showing support for their female family members. “My son got tested for the gene ten years ago, but refuses to see the results,” she says, shaking her head. “He’s careful about his health and gets regular screenings,” she says, “but still, he has daughters. He’s going to have to see the results for them eventually, you know, so they can make decisions.” She goes on to tell me that her daughter, who is ushering people to their seats, has had a preventive bilateral mastectomy with reconstruction. “She has so much anxiety,” she tells me. “She would have worried herself sick if she hadn’t gotten the surgery right after she got her [genetic test] results.”

Part of the ease with which she shares these intimate details of her family with myself

– a stranger – I suspect is due to the nature of the event. We are all here to see a film about the BRCA genes; we are ostensibly united around a common cause, a shared connection to genetic disease. But it seems to me that some of her candor about cancer stems from the

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unavoidable presence of the disease. It is so deeply woven into the fabric of her family life that she can’t talk about her family without talking about cancer. Her breathless, unembellished small talk is a stream of diagnoses and deaths and treatments and worries.

Her husband died only a year ago of throat and mouth cancer; they did all sorts of experimental stuff with his diet as a last resort and she still makes green shakes every morning – it can’t hurt; she got her ovaries out before menopause and is contemplating a mastectomy, but isn’t sure if it is beneficial for a post-menopausal woman; she should talk to her doctor about that – she’s right over there, actually; her mother died of breast cancer young, you know, and they were all just devastated by it as kids, so it’s nice to have options now with the gene test; good to have some awareness and support with this film and with

Angelina Jolie and everything; did I get one of those BRCA bracelets that they were giving out? She’s been looking for a nice breast and ovarian cancer awareness bracelet – no one puts the pink and green together on one; this one’s classy, isn’t it?

Every sentence is punctuated with cancer. It is stunning in its dreadful plainness and persistence.

As the film’s director Steve Bernstein goes on stage to make a short introduction, people quickly find their seats in a muted rush of shuffles and murmurs. Bernstein opens by asking everyone in the room who carries a BRCA mutation to please stand. Almost the three quarters of the room rises from their seats, shuffling, sheepishly looking around, some women catching the gaze of friends and smiling and waving. I stay seated. I do not carry a

BRCA gene mutation, nor does anyone in my immediate family. He asks us to applaud their bravery, lauding them for overcoming the odds – odds that are stacked against them as women who carry a high lifetime risk of developing breast and ovarian cancer. He then turns to a poised, redheaded woman standing in the front row and introduces her. This, he says, is

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Annie Parker. The film is about Annie. Her story is surely familiar to many women in the room. It is a story of suffering, of survival, and of science.

As I sit in this theatre, I think about this event and the story it tells about science and society. Whose history of breast cancer genetics is this and how does it shape, reflect, and refract popular perceptions of the BRCA genes – their emergence, their existence, their lived implications? In Primate Visions, Donna Haraway examines how the stories we tell matter in the making of matters of fact: “Scientific practice may be considered a kind of story-telling practice – a rule-governed, constrained, historically changing craft of narrating the history of nature. Scientific practice and scientific theories produce and are embedded in particular kinds of stories” (1989: 4). Scientific practice is about the stories scientists use to make and unmake their objects; it also is about the ways these stories of scientific objects circulate within and beyond the laboratory, making and unmaking worlds; it is about what kinds of stories about nature gain traction and move through these worlds, making and unmaking scientific objects in the process. Science, then, is many things. Science stories – stories in science and stories of science – are composed in and through recursive loops, sharp swerves, sideways movements, partial connections, unpredictable intersections, and circuits of appropriation in a rich sociopolitical field of knowledge production that extends far beyond the laboratory (c.f. Murphy 2012). Narratives of science and its epistemic objects move unevenly across social, technical, and intimate terrains of life. In the story of emergence of the BRCA genes, multiple threads intersect, overlap, and diverge as they weave together to develop a dense narrative of social inequality, cancerous kinship, political transformation, biotechnological development, biomedical uncertainty, social controversy, and financial futurity. This one tiny molecular unit of heredity touches on multiple, seemingly incommensurate scales and tenses of life in the recent history of the US. If we track their

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movement across their varied fields of emergence, it becomes possible to expose the uneasy attachments and enduring antagonisms that have converged around these scientific objects as they have gained texture and meaning in and over time.

So what histories of our lives and bodies and worlds does Annie Parker tell us through the BRCA genes? Decoding Annie Parker develops two parallel narratives about breast cancer and genetics – one social, one scientific. We follow Annie Parker, played by Samantha

Morton, as her mother is diagnosed with breast cancer while Annie is still in her womb. We then watch as her mother, sister, and cousin die early deaths of breast cancer. We see her have the same conversations with the same people at her mother’s funeral, then again at her sister’s funeral, and her cousin’s. And then we watch Parker develop the disease herself in

1980. At the age of 29, she undergoes chemotherapy and a radical mastectomy. We watch again as she is diagnosed with ovarian cancer eight years later, and undergoes a brutal treatment regime, losing her ovaries, her hair, her appetite, and living with excruciating pain.

We witness most of her doctors dismiss her suspicions that there is some genetic component to her cancer. Time and again, they brush off her concerns and chalk it up to bad luck, insisting that such a complex disease could not possibly have a singular cause. As she tries desperately to make sense of cancer’s relentless, savage recurrence in her own body and in the bodies of her female relatives, we watch Parker’s relationships dissolve and her body deteriorate.

Weaving in and out of Parker’s struggle is the research unfolding at UC Berkeley in the lab of Dr. Mary-Claire King. Played by Helen Hunt, King is attempting to locate a genetic link to breast cancer in families like Annie’s. She and a small research group of young mostly female postdocs in epidemiology and genetics are working with very rudimentary technologies in the face of much skepticism and opposition from her colleagues, many of

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whom think the gene search is futile and misguided. We witness most of her colleagues dismiss her suspicions that there is some genetic component to breast cancer, as they chalk it up to shared environment or viruses, and insist that such a complex disease could not possibly have a singular cause. King and her postdocs undertake time-consuming and tedious research, reaching for tenuous answers, as they go over and over family pedigrees and segments of gene sequences in the families’ DNA samples, trying to locate a faulty gene that may or may not exist.

The story ends where the global hunt for the exact location of the breast cancer gene begins. It is 1990 and King has delivered a paper at the conference for the American Society of Human Genetics in which she states that she has narrowed down the location of the breast cancer gene: it is on chromosome 17. It is safe to say that the gene exists; now they just have to find it and figure out what it does.

The story depicted by the film could be read as “Whig history” of science that presents the teleological march of research toward enlightenment, progress, and discovery. It is the unveiling of the always-already-there object of nature, writing history backwards such that the BRCA gene appears as the vanishing point of research – already present, patiently waiting to be uncovered. Hans-Jörg Rheinberger characterizes this type of narrative as the

“spontaneous history of the scientist” in which “the present appears as the straightforward result of a past pregnant with what is going to be.” In a “double reversion,” the spontaneous history “present[s] the new as the result of a prehistory that did not so happen” (1997: 186).

This spontaneous history of science is also a history of “gender-and-science-in-the-making,” to borrow Karen Barad’s phrase (2007). It is the story of some women’s struggles for epistemological legibility within the male-dominated terrain of science and medicine of the

1960s and 1970s. Parker is patronized, objectified, hystericized, and dismissed by a series of

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male doctors who refuse to acknowledge her experience of her own body as having epistemological value. The audience in the theatre collectively groans when her doctor says,

“I’m wearing a white coat; you can trust me.” King and her almost entirely female cohort of researchers are patronized, dismissed, undermined, and deceived by their male colleagues. As a female scientist, she has to work harder to prove that her gaze is as objective and reasoned as that of her male colleagues, particularly when she is crafting her research around the subjugated stories that women like Annie are telling about the cancer that ravages their families. Finally, Decoding Annie Parker is the story of personal achievement and triumph against all odds. The film tells the common American narrative of dreaming the impossible dream. Weaving the aspirational discourse of Parker’s cancer survival through the ambitious discourse of King’s scientific breakthrough, the film tells us that if you are strong enough and determined enough, you can overcome cancer, break research barriers, and defy gender discrimination.

Every story – and every epistemic object, since an object of knowledge is only given to matter as an object through the “frozen stories” (Haraway with Goodeve 2000: 107) that harden around it – is defined as much by what it incorporates as by what it omits; meaning- making is always an exercise in drawing boundaries between what matters and what is cordoned off as immaterial, inconsequential. This particular story of genetic science-and- gender-in-the-making is certainly about gender insomuch as it is about women and genetics, but the gendered narrative that it articulates reaffirms normative conventions of gender in relation to knowledge and power. The film is normative: it features straight middle-class white women saddled with the responsibility and the privilege of overcoming the odds. In this way, the film is also individuating: it makes solving gender, health, and knowledge inequalities a personal problem; it neglects the environmental and political dimensions that

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shape the distribution of risks for disease and death; and it largely overlooks the ways in which funding structures, dominant value systems, and prevailing epistemes set the agenda for what is knowable and treatable in a given moment. This last point is made clear in the film’s omission of the part of the story where a male colleague of King’s ultimately locates and patents the gene. By writing her authorship backwards as already part of the discovery, and glossing over the economic and political structures of authorship and invention that ultimately denied King and Parker their rights to the products of their knowledge and labor

(and Parker’s actual bodily substance), the film writes the wider contexts and consequences of the genetic “breakthrough” out of the story. Further, the film is prescriptive in its assumption that knowledge about genetic risk is always already desirable and empowering, and in its suggestion that, with the discovery of the BRCA genes, women can now take control of the cancer that has ravaged their families. While this is partly true, the film omits the other side of this story. The options available for women to “take control” are far from ideal: women can undergo screening every six months to try to detect breast and ovarian cancer early, they can take controversial chemopreventive drugs that increase their risk for other cancers, or they can preventively remove their healthy breasts and ovaries so that they do not develop cancer (that they are not guaranteed to develop) in the future. And for women who opt out of testing or treatment, exercising their right not to know and not to intervene, there is often a burden of responsibility that falls to them if they do develop cancer, as though it is somehow their fault, rather than the responsibility of corporations and governments who are allowing carcinogens to be pumped into their environment and absorbed into their body. Thus, while the film signals some of the ways in which science is always already social and vice versa (even as its narrative form falsely separates the social

(Parker) from the scientific (King)), it fails to sufficiently imagine how practices of knowing

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and intervening in the bodies of vulnerable subjects might be done more responsibly and more justly across individual, institutional, and systemic scales.

In what follows, I write through, around, and against this popular science story. In doing so, I do not attempt to adjudicate the real or the true story: “real” fact and “theatrical” fiction are not at opposite poles of a spectrum of verity, but are rather deeply entangled in the process of making any epistemic thing or idea, as things and ideas and bodies and events move between different fields of knowledge and registers of experience. Instead, I attempt to trace the manifold stories and practices that congeal around and get absorbed into DNA broadly and the BRCA genes specifically. I approach these objects of knowledge as “nodes of durable action where many actors, human and non-human, meet” (Haraway 1997: 142) and explore how such nodes encapsulate the social and political history of the genetic sciences in the second half of the twentieth century. By writing through and around the

BRCA genes, I employ Haraway’s “diffractive” methodology in order to craft a

“heterogenous history” (273) of the multiple actors, fields, practices, technologies, affects, bodies, institutions, and policies at play in making genes matter. Haraway offers diffraction as an optical metaphor for a method that “does not map where differences appear, but where the effects of differences appear” (1992: 300). Diffraction records movements around and relations with an object; it carries the traces of a “history of interaction, interference, reinforcement, difference” (Haraway with Goodeve 2000: 102). Diffraction allows us to follow the processes through which certain histories are given to remain as trajectories in knowledge formation, allowing specific material and semiotic practices to intersect and reinforce one another, recording a coherent, legible object through their “constructive interference” (Barad 2007). Diffraction also allows us to analyze how these histories are also composed in and through their exclusions, as certain material and semiotic practices that

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might compose alternative trajectories fail to fully come together, to be taken into account, or to cohere into a clear, recorded pattern. These “destructive interferences” (ibid) lead to their presence being recorded as absence, showing up as black negative spaces – noise – around the legible patterns of light in the patterns of diffraction recorded on photographic film. These records, too, remain, but they are not always articulated or acknowledged as such.

While I use the language of “recording,” I employ it to unravel rather than reinforce common oppositions between the archival capture of historical events and the embodied acts of movement and transfer that unfold in and over time (c.f. Taylor 2003). In my writing,

I approach DNA as an object that itself is imagined as a lively, bodily archive. That is, DNA is a biological past bodied forth in the present, an inheritance that is of and in the body; it is also constituted as DNA outside of the body through a range of laboratory practices of representation, manipulation, and purification in “DNA libraries” in which the bodily material lives in a disembodied state in petri dishes and test tubes; and finally, it becomes an object of knowledge and an aspect of the body in relation to historically situated configurations of the political, social, economic, and technological that make genes into objects that matter. By following DNA as it emerges through moments of contact, transmission, contradiction, and dissension between and across these spheres of composition and repetition, I highlight the historical contingency and performatic co-articulation of objects of knowledge, practices of knowing, and systems of knowledge, as the gene emerges as always both archive and repertoire.

I begin my own version of the story in 1968, when James Watson published his controversial account of the discovery of the double helical structure of DNA, which enables a cell to copy itself. I read Watson’s personal account through the resounding chorus

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of criticism that he received from his colleagues in the sciences, suggesting that his subjective mode of writing science history is indicative of a shifting moral economy of objectivity in the growing field of molecular genetics – from modest witnessing to immodest witnessing. I begin again in 1968, as student protest movements accused the biological sciences of contributing to gruesome wartime efforts through developing biochemical weapons and condemning scientists for acting against nature through the production of poisonous pesticides and other environmental contaminants. Mid-century anti-war and environmental movements put massive systemic pressure on the US life sciences to “research life” instead of promoting “death.” Transformations in science policy, government funding, and public opinion following from this period of political foment forced massive restructuring of the biochemical and pharmaceutical industries, leading to the creation of new lively objects of study and speculative modes of bioaccumulation in the life sciences. I end by returning once more to 1968, when the young geneticist Mary-Claire King was working for Ralph Nader’s anti-pesticide campaign in California and pursuing a PhD in human genetics and epidemiology at UC Berkeley. Through the unfolding of her research in ensuing years, I examine the multiple scientific “theatres of representation” (Hayles 1993) within which the

BRCA genes were staged, as they emerged at the blurry edges of the concrete in the analysis of pedigrees and the comparison of gene sequences in families. I then trace the moments and mediums through which the genes “move[d] on stage as ‘significant units’” (Rheinberger

1997: 21) in the temporally fitful process of staging discovery, as scientific forums and popular media outlets repeatedly described the genes as already present in the advance of their actual localization. Across these different historical scenes of scientific research into a genetic possibility – the future birth of the past copy – I illuminate fitful transformations in the performance culture of science during the second half of the twentieth century.

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Copy

I have often thought how much more interesting science would be if those who created it told how it really happened, rather than report it logically and impersonally as they so often do in scientific papers. This is not easy, because of normal modesty and reticence, reluctance to tell the whole truth, and protective tendencies towards others. - George Beadle (1966), American geneticist and Nobel laureate, in Phage and the Origins of Molecular Biology

While diffraction is the methodology I adopt in my own analysis, it was also key technique employed in the research leading to the discovery of DNA’s double helical structure – the structure that enables it to replicate – sparking decades of intense research and explosive growth in the field of molecular genetics. An x-ray photograph of the DNA molecule generated in 1952 by Rosalind Franklin, a female biophysicist at Kings College in

London, was central in enabling James Watson and Francis Crick to develop a model of the structure of DNA. Their illicit access to Franklin’s unpublished research in many ways led to their celebrated 1953 model of the double helix, which has retroactively been marked as the origin of a major paradigm shift in the sciences from classical genetics to molecular biology

(Halloran 1984). However, Franklin’s role in this process of discovery was defined by its constitutive absence: she has largely been written out of the dominant historical narrative of the double helix, as she was written out of their 1953 paper (her work was not cited). She was not credited with her work until over a decade after the 1953 discovery of the double helix. When her work on “Photograph 51” was finally acknowledged publicly in 1968 – four years after the Nobel Prize went to her colleagues Watson, Crick, and Wilkins, and ten years after her untimely death of ovarian cancer at the age of 37 – Franklin was only credited through Watson’s critical and unflattering depiction of her in his popular nonfiction novel about the discovery. If we look closely at Rosalind’s work on x-ray diffraction and then

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follow it through Watson’s contentious personal account of his DNA research, Double Helix, it becomes possible examine a different set of diffraction patterns, as capture the effects of a changing social and political context of scientific practice. This 1968 publication caused an immense stir through its irreverent portrayal of scientists and their objects, infuriating many of Watson’s colleagues while simultaneously increasing popular interest in the everyday practice of science. I suggest that these patterns of interference touch on other contexts and narratives, revealing the traces of changing modes of scientific authorship and authority as different historical configurations of objectivity emerged during the late 1960s and 1970s in convergence with the growth of the field of molecular genetics.16

Between 1944 and 1952, several different experiments were slowly and quietly proving that DNA is the “language of life” that passes genetic information on in the process of cellular division and replication (c.f. Avery et al 1944; Hershey and Chase 1952). During this period, the experimental life sciences had added an arsenal of new apparatuses for observing, manipulating, and generating their genetic objects of study. The available techniques of visualizing genetic relation and mutation – photography, pedigrees, cytology – !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 16 As Lorraine Daston and Peter Galison argue (2007), objectivity is historically specific and cumulative. “Blind sight” crystallized as an epistemic virtue in the nineteenth century with the rise of “mechanical objectivity,” that desired to “let nature speak for itself” through equipment that would render an exact likeness of the object of study. This was in opposition to eighteenth century models of objectivity that relied on encyclopedic accounts that spoke “truth to nature,” creating the representation of the ideal, abstracted type of an object of study through a practiced form of study, rather than capturing its variation and imperfection, as one would in a photograph. Since the mid- twentieth century, Daston and Galison suggest that another form of objectivity has emerged, which is “trained judgment.” This is a mode of objectivity that is composed in conjunction with subjectivity: it requires active interpretation instead of passive judgment, and relies on the senses, experiences, and training of an engaged and interested expert. Daston and Galison use the metaphor of the double helix to describe this transition: “By the mid-twentieth century, objectivity and subjectivity no longer appeared like opposite poles; rather, like strands of DNA, they executed the complementary pairing that underlay understanding of the work objects of science” (361). While they chart multiple epistemic formations of objectivity that have reigned in different periods, Daston and Galison also recognize that they may collide with or borrow from other regimes, but they do not annihilate one another; they accumulate (363). Although I make an argument for an epistemic shift in scientific practice and presentation, I do not suggest that the other modes of knowing have receded into some distant past.

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could not wholly capture objects at a molecular scale. These techniques were complemented by a new set of representational practices through which chemists, physicists, and geneticists came to know their objects of study. In simple genetic terms this transformation had begun to slowly develop after the rediscovery of Mendel’s laws at the turn of the twentieth century, in which research into phenotype (the visible manifestation of genetic inheritances) was complicated and complemented by the study of genotype (the science of tracing underlying genetic patterns of transmission – such as dominant and recessive traits – that may or may not be manifested in physical appearance). With this shift, the indexical trace of the photograph ceased to provide sufficient insight into the mechanisms of inheritance; other tracing practices emerged to develop recordable marks that would render the outlines, the residue indicating the composition of the as-yet-invisible molecular objects of inquiry through the use of radioactive markers, fluorescent dyes, or x-ray waves.

Following the scientific tenet that function follows form, teams of physicists, chemists, biologists, and geneticists in the US and UK began working with diverse tracing technologies to determine the structure of DNA that enables it to serve as a template for storing, transmitting, and copying genetic information. In the context of this research, it was the use of x-ray diffraction photography that enabled scientists to determine that it was a helical structure. In 1952 – the same year that the Hershey-Chase experiment proved unequivocally that DNA holds and transmits the genetic code – Rosalind Franklin imaged the helical structure of DNA using x-ray diffraction photography. The DNA molecule is too tiny to photograph with a camera, so it is imaged as an indirect picture. The diffraction photograph is not of the DNA itself in the conventional sense of an image; it is a picture of

DNA’s effect on the x-ray waves passing around its invisible structure, which obstructs their path. When an x-ray beam is passed through the DNA molecule – which has a regular and

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specific structural arrangement of its component parts – the x-ray waves ricochet off the minute structures, scattering in multiple directions. When the x-ray waves bounce off of and move around the crystalline atoms that compose the DNA molecule, they leave behind visible, negative traces in a diffraction pattern of light and dark on a piece of photographic film. This pattern is an outline of the movement around the object, rather than an image of the object itself. While a photographic image provides a visual record of likeness, seeming to still movement and freeze an object in time17, the patterns of light and dark in a diffraction photograph show a “record of passage” (Haraway 2000: 103) pointing to patterns of movement through which they came to be.

Figure 5 is Franklin’s “Photograph 51,” which illuminates the diffraction pattern of x-rays moving through a crystalline DNA molecule. The black marks are the traces of the x- ray diffraction as the waves were deposited on the photographic film when they bounced off of the DNA. The laws of diffraction hold that x-rays moving through a helical (spiral-like ladder or coiled shape) structure produce an x-shaped pattern, as shown in the center of the photograph. Franklin noted the helical nature of this structure as early as 1951 in a lecture stating “The results suggest a helical structure (which must be very closely packed) containing 2, 3, or 4 co-axial nucleic acid chains per helical unit, and having the phosphate groups near the outside” (quoted in Sayre 1975). Yet, Franklin was a strict positivist; she was a more-than-modest scientific witness who refrained from publishing her findings until she could prove definitively that the structure was helical in nature.

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 17 I say that photography seems to still movement because Rebecca Schneider (2011) has troubled conventional readings of the stillness of photographic arrest by re-routing the history of photography through theatre history. Such a reading puts the arrest back into motion, as it is always staged again (as a pose or as a “live” encounter) across bodies and between times.

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Nearby, at the University of Cambridge’s Cavendish Laboratory, American geneticist and biologist James Watson and English biophysicist Frances Crick gained access to

Franklin’s unpublished data related to Photograph 51 through her colleague Maurice

Wilkins. Only months before,

Watson and Crick had been ordered to cease research on

DNA by their lab director, Sir

Lawrence Bragg because they had made so many embarrassing missteps (they modeled DNA inside out and improperly crammed the bases together with no means of binding them Figure 5. Rosalind Franklin and Raymond Gosling, 1952, “Photograph 51” in the B form, Kings College London, © Nature Publishing Group

and without accounting for complementarity of base pairs). But working steadily and stealthily with this new data, combined with recent work by a chemist at Columbia

University Erwin Chargaff,18 Watson and Crick managed to build an accurate theoretical model of the physical helical structure of DNA out of cardboard and metal.

In their April 1953 paper announcing their findings in Nature, Watson and Crick wrote, “It has not escaped our notice that the specific pairing we have postulated immediately suggests a possible copying mechanism for the genetic material” (Watson and !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 18 Chargaff had shown that the four nucleotide bases of DNA (Adenine, Thymine, Cytosine, and Guanine, often spelled out as ATCG in contemporary DNA sequences) would stick together in complementary pairings. A pairs with T and C pairs with G. Further, Chargaff found that these pairings always appear in the same proportions (1:1:1:1).

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Crick 1953). The structure had a smooth sugar-phosphate backbone, and was built like a spiraled ladder, with equal-length sides running in opposite directions, joined together by base pair rungs. The rungs are joined by complementary base pairs stuck together (A-T rung,

C-G rung). When a new molecule is being formed, the DNA helix unzips the sides of the ladder, dividing into two complementary strands that result in identical daughter strands.

This model became key in understanding how genetic information is stored and copied, and set the stage for major biological and medical innovations in the rising field of molecular genetics over the second half of the twentieth century.

Franklin was not included in the 1962 Nobel prize that went to Watson, Crick, and

Wilkins for their findings. There is wide debate about whether she would have received the prize if she had not had died of ovarian cancer in 1958.19 Some suggest that it is unlikely that

Franklin would have received recognition since she was given little credit for her work on

“Photograph 51” until James Watson mentioned her in his book about the research process.

Generally, when any credit was given in the years leading up to the 1962 award, it was attributed to her male colleague, Maurice Wilkins, with whom Franklin had a contentious relationship. However, because the guidelines of the award stipulate that a person cannot receive the prestigious prize posthumously, this debate remains unresolved.

In 1968, Watson brought Franklin’s role in the research process to light through his largely dismissive remarks about her in his “nonfiction novel,” The Double Helix. In his personal account of the fitful scientific “race” (few others called it this at the time) to determine DNA’s structure, Watson details some of the contributions made by “Rosy” – a

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 19 It has been speculated by her biographer that her cancer was likely caused by a deadly combination of prolonged exposure to radiation through her x-ray diffraction research and a possible hereditary predisposition to ovarian cancer (she developed the disease young, had a family history of ovarian cancer, and was of Ashkenazi Jewish descent – these three factors are strongly correlated with carrying a BRCA gene mutation) (Maddox 2002).

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diminutive name that Franklin never went by. While dwelling largely on her appearance

(“she was not unattractive”) and incalcitrance (“Maurice [Wilkins] hoped that Rosy would calm down. Yet […] she would not bend”) (Watson 1968 [2012]: 10) rather than her actual scientific accomplishments, Watson’s best-selling work nonetheless surfaced the grave citational omissions, gendered exclusions, and social biases that marked the process of discovering DNA’s self-replicating structure.

The book caused an immense stir before it was even published. In 1968, the New

York Times ran a piece on the Harvard Corporation’s almost unprecedented decision to overrule the Board of Syndics in ordering Harvard University Press to abandon publication

(Sullivan 1968, quoted in Chadarevian 2003: 98). This action was largely the result of pressure from Watson’s collaborators, Francis Crick and Maurice Wilkins, who both firmly opposed the book’s publication. Both men expressed deep concern about how the book represented scientific research and researchers in a non-objective and dubious light. A major worry for both men was the embarrassment that might be caused by making public the little- known fact that they used Franklin’s unpublished data without her knowledge or permission and without crediting her. Wilkins was also anxious about the stakes of representing Franklin in such a negative light, partly because she was no longer alive to defend herself from such vicious attacks. In a 1966 letter to Watson, Wilkins writes that he refuses “to stand on one side while Rosalind is discredited.” As her colleague, he insists that he “cannot approve of

[the book’s] publication: she would certainly not if she were alive” (1966 [2012]: 289).

Watson’s unpleasant treatment of Franklin, however, seemed to stand for larger concerns than her legacy. In letters penned by Wilkins and Crick to Watson in 1966, they fret about

Watson’s indiscretion, as his portrayal of Franklin (and its reflection on himself and his colleagues) betrays the cultural and political underpinnings of scientific practice.

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In a letter from Wilkins to Watson from 1966, Wilkins expresses reservations about

Watson’s representation of science as an all-too-human endeavor. Wilkins suggests that he, too, is “tired of polite covering-up and misleading inadequate pictures of how scientific research is done” (1966 [2012]: 288), however, if they are going to “take the lid off” of the scientific research process by replacing the “old conventions” of modesty and objectivity, he insists that it is important to “choose carefully how.” For Wilkins, “the barrier between the arts and the sciences is a bad thing and […] there is a real need to establish, in the intellectual and academic world, science as a cultural activity deserving respect” (289). However, Wilkins worries that “[Watson’s] book would present to non-scientists a distorted and unfavourable image of scientists […] that would impede such developments” (ibid).

In a six-page letter of bullet-pointed objections dated 1966, Crick is less diplomatic than Wilkins in his critique. He urges Watson not to publish the book based on its historical inaccuracy and scientific immodesty, insisting that it is

absolutely clear that your book is not history as normally understood […] Should you persist in regarding your book as history I should add that it shows such a naïve and egotistical view of the subject [of the discovery of the structure of DNA] as to be scarcely credible. Anything which concerns you and your reactions, apparently, is historically relevant, and anything else is thought not to matter (1966 [2012]: 297).

The critiques leveled by Wilkins and Crick suggest that Watson’s Double Helix flouts the most central scientific tenets of modesty and objectivity. In their letters, his colleagues find his account to be sorely lacking in intellectual rigor and historical accuracy, while it is brimming over in hearsay, gossip, and gross caricatures. As Crick asserts of Watson’s book, “gossip is preferred to scientific considerations” (Crick 1966 [2012]: 297). Meanwhile Wilkins suggests

Most top scientists are fairly civilised, but your book, though you may not intend it, would give many people an impression of Francis as a feather-brained hyperthyroid, me an overgentlemanly mug, and you an immature exhibitionist: This would not be fair to any of us or to scientists in general (Wilkins 1966 [2012]: 287).

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Wilkins and Crick’s opposition to the publication of Watson’s personal account of their research endeavor lays bare a broader set of concerns around the stakes of representation in and of scientific practice. The concern of Wilkins and Crick does, of course, entail their own negative portrayal in the book (and tangentially, Franklin’s), but they also seem to be occupied with what Watson’s account – as an account of science and scientists – should and should not do. It could be said that their letters express a marked apprehension about the social, historical, and scientific ramifications of Watson’s public act of “immodest witnessing.” 20 Since the Scientific Revolution in the seventeenth century, the “modest witness” has been a central figure in experimental scientific practice (Shapin and Schaffer

1985). This objective subject’s capacity to render himself invisible is utterly central to the establishment of scientific facts. By working to erase himself – his labor, his body, his biases

– from the scientific process, he is able to bear witness to an object world unmediated by his presence or labor. Specifically, by rendering his modest invisibility visible through a set of mechanical, rhetorical, and theatrical techniques, he would render invisible his biased subjectivity and lived embodiment, thereby showing only the matter at hand – the objective matter of fact. Through the use of these conventions, his modest powers of observation would come to appear so strong that “his narratives could be credited as mirrors of reality”

(Shapin and Shaffer 1985). His unmarked subjectivity would become his objectivity

(Haraway 1997: 24). In other words, through his self would be darkened out in the negative space of diffraction, but both the dark and light patterns on the screen are ones that he !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 20 Michelle Murphy (2012) uses the phrase “immodest witness” to describe the centrality of the (feminine) subject within practices of self-knowledge produced by women participating in the US feminist self-help movement during the 1970s. While I am indebted to her for this play on Shapin and Shaffer’s (1985) masculine, unmarked model of the seventeenth century “modest witness” in experimental science, I employ the phrase to develop a related, yet divergent argument regarding the importance of the scientist as immodest witness within changing affective economies of venture science.

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played a part in producing. In theatrical terms, he lights the stage to obscure the appearance of the backstage, which is necessarily “obscene.”21

In Restoration England, chemist, Robert Boyle, played a key role in establishing the three technologies that would enable this scientific mode of “self-invisibility” (Haraway

1997: 23). The first was a material technology, which consisted of an instrument, technology, or mechanism that was a neutral device to measure or produce the scientific phenomenon being studied. In Boyle’s case, the material technology was an air pump. Such an instrument allowed Boyle to demonstrate the matter of fact of a vacuum, while factoring out his agency in the process, asserting “It is not I who say this; it is the machine” (Shapin and Schaffer

1985: 77). The second technology was literary; it required a mechanical, disinterested type of writing that conveyed the experimental procedure to those who did not bear direct witness to the technical demonstration, enabling the laboratory to extend into other realms through the mobile device of literature. Described as “mimetic devices” or “scripts,” these literary technologies were detailed protocols that both provided the reader with the information necessary to test the experiment through replication and enabled the reader to bear “virtual witness” through a “vivid impression of the experimental scene” (62) (I say “him” because women were excluded as active witnesses in the production of truth; they could only passively watch). Finally, the social technology made the experimental work a collective project of public performance and witness. The laboratory was an open space, a “theatre of persuasion” in which a collective could bear witness to nature’s truth through public demonstrations.

Combined, these three technologies enabled the production of social, political, and scientific assent around a shared set of truths and conventions (including the conventions of

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 21 I am indebted to Rebecca Schneider for drawing this connection between diffraction and theatre.

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excluding certain gendered, raced, and classed subjects from the production of truth), and

“worked to achieve the appearance of matters of fact as given items” of nature, rather than human-made objects of inquiry (25). While the laboratory was a theatre of persuasion, it was only persuasive insofar as it obscured its own conditions of production. To be the direct mirror of reality, the space had to be carefully crafted so as to exclude all aspects of reality that were deemed excessive or obstructive of the particular reality that the scientist aimed to reflect (the parallels with naturalism in theatre are not lost on me). Paradoxically, the highly artificial and regulated cultural space of laboratory enabled it to appear as though it were a

“culture of no culture” (Traweek 1988) that offered a “view from nowhere” (Haraway 1991).

By hiding the heavily manipulated conditions of the laboratory’s cultural and technical production, nature could move center stage as an object of knowledge that appeared indisputable and beyond human interference.22

A modest account would attempt to erase the author’s agency by accounting for his findings in the most neutral and disinterested tone, omitting personal opinions or biases, and presenting all of the data necessary to understand and replicate the experiment. An immodest account, it seems, would muddy the scientific process with the social context – the squabbles, the sexism, the egos, the errors, the assumptions, and the tainted ethics.

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 22 This epistemological terrain did powerful cultural work, generating and naturalizing social differences while also drawing a divide between (women and) nature-out-there and man-made- culture. Part of this work entailed excluding women from knowledge production within this closed space. Women had been a rich part of alchemical traditions and folk medicine leading up the Scientific Revolution. Indeed, early uses of the word “empiricism” (“empiricks”) were tied to folk knowledge about medicine before they were appropriated and absorbed into the apparatus of early modern rational scientific practice (Shanahan 2008). The culture of the laboratory was marked by an active practice of physically and epistemologically excluding women, as early experimentalists such as Robert Boyle worked to draw a clear distinction between the early domestic spaces of alchemical and emprickal traditions and the emergent laboratory space of the empirical sciences. Meanwhile, in experimental practice, gentlemen of science worked to elide the skilled physical labor by artisans, clerks, technicians, and others on which their experimental apparatuses crucially relied (Shapin 1989). For a thorough and compelling critique of the construction of gendered and classed difference through scientific practice, see Donna Haraway’s Modest Witness (1997).

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Watson does all of this, repopulating the history of scientific discovery with his recollections of all of its messiness, contingency, and competition. He clearly writes from a position – he has a view from somewhere. For his disapproving colleagues, his knowledge is stubbornly situated and singular, chafing against the grain of a knowledge regime that claims to have a god’s-eye-view of the world – a view from nowhere (Haraway 1991). Watson’s collaborators are struck by his blind willingness to stage his social blindspots and scientific biases in a discipline that has its roots in effacing and erasing them through the “blind sight” of objectivity (Daston and Galison 2007). While this might have appeared at the time to be an obnoxious idiosyncrasy of Watson’s, I suggest that it illustrates historical transformations that were afoot in regimes of objectivity, as life science was absorbing other epistemic values within a changing knowledge economy. Within this changing “moral economy of science”

(Daston 1995), conventions of modest objectivity were being destabilized, as objectivity came to be perforated by subjectivity.

As we may know, Watson did not heed his friends’ and Harvard’s requests to suspend publication. He simply turned to a commercial press to publish his science story, which quickly became a bestseller. When the Double Helix came out, Watson’s Columbia

University colleague, biochemist Erwin Chargaff (his important insight into complementary base pairings of A with T and C with G was central to the process of determining DNA’s structure) wrote a particularly harsh critique in the major journal Science. In his review,

Chargaff registers disdain for Watson’s rendering of sideshow science, as he divulges indiscreet details about his colleagues and himself that distract from the core story of scientific research. “Habitual readers of gossip columns will like the book immensely,”

Chargaff offers. “They will be happy to hear about the marital difficulties of one distinguished scientist, the kissing habits of another, or the stomach troubles of a third”

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(1968: 1448). He continues with biting sarcasm “it is a great pity that the double helix was not discovered ten years earlier; some of the episodes could have been brought to the screen splendidly by the Marx brothers” (1448). While Chargaff finds some parts of the book to be indiscreet or comical, he suggests that other sections are simply “nasty,” specifically “the merciless persiflage” of the late Rosalind Franklin, whom, Chargaff assures the reader, he knew personally and, contrary to Watson’s portrait of her, was a “good scientist” (1448-9).

Chargaff spends a good deal of his review lamenting Watson’s hubris and impropriety as a loss of scientific virtue, but concludes by suggesting that Watson’s brand of immodest witnessing is perhaps not unique to this young man’s auto-hagiography. It is instead indicative of a new breed of speculating and “charismatic” (Chargaff uses this adjective disdainfully) scientists that have emerged with the recent industrialization of the life sciences. He writes:

[…] the ‘heroes’ of Watson’s book represent a new kind of scientist, and one that could hardly have been thought of before science became a mass occupation, subject to and forming part of, all the vulgarities of the communication media […] The modern version of King Midas has become all too familiar: whatever he touches turns into a publicity release (1449).

The publication of Watson’s book in 1968 coincided with a broader set of shifts that were underway in the biological sciences. These transformations had partly been instigated by an explosion of research following the discovery of the properties and structure of DNA as the key mechanism of heredity, but more broadly were due to the shifting social and political field of science research. Within this context, the theatre of scientific persuasion was expanding beyond the laboratory space, as the life sciences moved center stage as an object of increased public scrutiny, political (de)regulation, and private financial investment.

Chargaff and others noted this emergent shift with disapproval, as they “bemoan[ed] a science turned theatrical,” to borrow a phrase from Rebecca Schneider in reference to

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another spike in (mimetic) anxiety around cloning and its indiscreet origins (2001). But it was precisely DNA’s indiscreet origins that were at stake – as the mimetic foundations of nature, that is, our body’s ability to reproduce itself through the copying mechanisms of DNA’s double helical structure – in Watson’s indiscreet account of the scientific origin of DNA’s structure. Suddenly, nature was reflected through the muddy mirror of an authentically inauthentic scientist who had turned the scientific lab into a theatrical stage on which to play out a decidedly social drama (as though they were separate).

Others, however, celebrated this changing mode of subjective objectivity. In another review of Double Helix entitled “Truth, Truth, What Is Truth (About How the Structure of

DNA was Discovered)?” Nobel Laureate microbiologist André Lwoff celebrates Watson’s account: “He has written with such absolute sincerity and innocence, and recorded his impressions with such candor, that he becomes transparent” (1968: 229). Transparency, for

Lwoff, was not about the transparency of the object of scientific inquiry; it was about the transparency of the researcher and the research process. The immodest witness is one who renders explicit his biases, errors, and embodiment – his situatedness in a world – in order to render a more “honest” view of the inner workings of research and discovery. He becomes more objective by making his subjectivity apparent.

In many ways, Watson’s controversial book is emblematic of the changing stakes of scientific representation, as it participated in “demythologizing scientific practice” (Chargaff

1968) and reimagining the moral and rhetorical economies of research and discovery in the life sciences. In the following section, I take a few steps back and over to trek across the heterogeneous, conflicted social and political topography in which this epistemic shift was unevenly unfolding. Within the same period that Watson was loudly singing his own praises and jovially staging the entanglement of scientific and social worlds in his popular book,

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other scientists and social activists were beginning to attack the mystical modesty of scientific witnessing, laying bare the inconsistencies, interests, and investments of research pursuits and objects in the biochemical sciences that were contributing to a brutal war effort abroad and poisonous environmental exposures and accidents at home.

Capital

A grim specter has crept upon us almost unnoticed, and this imagined tragedy may easily become a stark reality we all shall know. - Rachel Carson, “A Fable for Tomorrow,” Silent Spring, 1962

The insularity of the scientific community and its traditional insistence upon sovereignty and subsidy are clearly on the way out. Political necessity now dictates that science must be more responsive to the needs and tastes of the public. -Daniel Greenberg, “Money for Research,” Science, 1967

During the 1960s and 1970s in the US, a constellation of social movements, political policies, scientific innovations, and economic transformations converged to radically reshape the nature of research in the life sciences. Through the 1940s and 1950s, scientific research had been heavily funded by the federal government and widely trusted by the American public. The medical and life sciences were regularly celebrated for making major advances in treating and preventing infectious disease. By 1959, the polio vaccine had relegated a scourge of a disease to the margins of public health and almost 80 percent of the vaccines and antibiotics on the market – including penicillin, streptomycin, and cortisone among others – had been developed in the previous fifteen years (Vettel 2006). However, several developments in the 1960s precipitated the erosion of public trust and federal support for research. Ecological critiques of the biochemical industries, social protests against chemical warfare in Vietnam, an economic recession, intense global forecasting about the dire

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environmental and economic limits of industrial production, and significant technological developments in the manipulation of life outside of the body (in vitro) all combined to change the economic, moral, and technical landscape of the life sciences. By the early 1970s, molecular biology had become a highly speculative terrain that trafficked in the manipulation and accumulation of “life itself” (Franklin 2000; Rose 2001).

In 1962, two years before her death from metastatic breast cancer, American marine biologist Rachel Carson published Silent Spring. This groundbreaking book launched a searing critique of the environmental and carcinogenic hazards of synthetic pesticides. Based on twenty years of research into the scientific, military, and industrial tangle of post-WWII chemical production, Carson’s book spurred an environmental movement that ultimately led to national bans on certain pesticides such as DDT along with bans on insecticides and herbicides, the passage of anti-pollution laws, the funding of alternative energy research, and the creation of the US Environmental Protection Agency in 1970.

In the same year Silent Spring came to press, Thomas Kuhn published The Structure of

Scientific Revolutions, which argued that scientific research and discovery is embedded in social and historical structures, rather than insulated from them. Nowhere was this more evident than in the growing public concern about the complicity of the biological sciences in producing biological and chemical weapons to be used in the Vietnam War. While in the early years of the war, much of the US population had celebrated the promises of scientific research to provide salvation from the misery of suffering and disease, as the US presence in

Vietnam increased in the 1960s, so did public awareness of the gruesome and enduring effects of the uses of napalm and agent orange on humans and the environment. The combination of these concerns began to “take the lid off” of scientific research, to quote

Maurice Wilkins, and call into question the “myth” of science’s modest witness.

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Environmental activists joined forces with anti-war activists to condemn scientists for manufacturing human death instead of nurturing human life. “Earth Day”23 anti-science protestors at UC Berkeley insisted that “science has fueled the war […] and the war has destroyed the environment,” while the group Science for Public Death insisted that the callous scientists had contributed to the “degradation of the life sciences” by promoting public death through “the gradual perversion of advances in those biological sciences to which it has historically entrusted the promotion of human life – medicine, agronomy, pharmacology, and biochemistry” (Vettel 2006: 114). Student activists were beginning to stage massive sit-ins and teach-ins on college campuses urging researchers in the sciences to

“Research life, not death” and “Put life first!” (94). Part of the imperative to research life was to increase the focus on applied research instead of “pure” research, as the latter could be easily subverted to nefarious ends in war and industry.

As early as 1966, researchers would begin to feel the pressure to change, as they were being simultaneously spanked by protestors and squeezed by massive science funding cuts at state and federal levels. The shrinking research budget came as the result of a waning economy and an increased demand that scientists respond to public demands by making a case for how they could transfer their findings from the “bench to the bedside.” In his

Special Message to Congress in January 1966, Lyndon B. Johnson set the tone for changing priorities in the biological sciences:

We must make sure that no lifesaving scientific discovery is locked up in the scientific laboratory. The day of the great discoverer is over. Our task now is not discovery, or exploitation of scientific laws, or necessarily producing more knowledge. It is the soberer, less dramatic business of distributing money to more humane scientific research projects, of seeking to re-establish public health, and of meeting the problem of disease in urban centers (Johnson 1966).

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 23 Earth Day was the name of a particular Bay Area protest group before it became an actual festival day in 1970 (see Vettel 2006).

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Research would now have to be applied, humanistic, and responsive to the needs of the

American people who were footing the research bill (though far less of the bill than before

1966). The convergence of slashed public funds, declining public support, and shifting research priorities led scientists to try new rhetorical strategies in order to acquire the research funds and public interest they needed to continue to pursue their work. The scientific “theatre of persuasion” was no longer only about generating consensus around what constitutes a matter of fact; it now also about selling the social and economic utility of scientific findings to multiple publics.

In 1967, Stanford University biochemist Arthur Kornberg pioneered this new strategy by releasing a major press release when he and his team managed to artificially create a biologically active segment of DNA in vitro. Kornberg had received the Nobel Prize less than ten years earlier for his isolation of the enzyme DNA polymerase, which plays a critical role in the replication of DNA. Subsequent to this work, Kornberg had been manually and artificially attempting to replicate an exact copy of viral bacterial DNA in vitro (from the

Latin, “in glass”) – that is, removed from the living body of the organism and maintained in a test tube environment. While many researchers had managed to artificially produce exact copies of DNA, identical in both composition and structure to the original, Kornberg’s team was the first to generate synthetic DNA that could be brought to “life,” and was therefore biologically active and able to self-replicate (Vettel 2006: 139). When the Stanford researchers accomplished this feat, they wrote up their findings and sent them off to the

Proceedings of the National Academy of Sciences for publication in the major science journal. They then did something unprecedented: before the report made its way through the peer-review process, they went to the popular press with their story (Greenberg 1967).

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Within days of Kornberg’s press release, President Johnson publicly announced the

DNA discovery during his remarks at the Smithsonian Institution’s bicentennial, telling his audience to keep an eye on the newspapers for “what is going to be one of the most important stories you ever read, your Daddy ever read, or your Grandpappy ever read […]

Some geniuses at Stanford University have created life in a test tube!” (Kornberg 1989: 202).

The implications of this discovery were, for Johnson, profound: “It could be the first step toward the future control of certain types of cancer” (Greenberg 1967: 1550). This dramaturgy of DNA perfectly staged the possibilities for bench research to enrich the health futures of the nation.

Press coverage in the following days effectively recast the biosciences as major contributors to curing cancer and social ills, in a complete reversal of the role that they had been inhabiting for years in the public imagination, as major contributors to causing cancer and social ills. The Los Angeles Times raved that this breakthrough in DNA synthesis “may open up new avenues of research into finding out what takes place when normal cells are changed into malignant, cancerous cells” (quoted in Kornberg 1989: 202). Meanwhile, the

New York Times suggested that the creation of life in a test tube means that it was now

“conceivable that man will be able to make an exact duplicate of a genius, such as an

Einstein, with DNA” (quoted in Greenberg 1967: 1549). Suddenly, the social and financial salvation of science seemed to lie in publicly staging the possible benefits of bench research to the future health and wealth of the nation. In short, the future of science resided in selling its futures, wildly speculating on its potential frontiers of application (and duplication). These science futures, such as those held forth by Kornberg’s creation of “life in a test tube,” which literally enabled the reproduction of life beyond the body, also became the site and source of new modes of capitalist [re]production that would allow industrial production to

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overcome the environmental and economic limits of growth. For, in this same period, diverse groups had begun to examine the proliferation of risks that attend industrial expansion with an eye toward the possibly apocalyptic implications for world futures.

Between 1968 and 1972, Italian economist Aurelio Peccei organized an international team of industrialists, scientists, economists, educators, and politicians to form the Club of

Rome. The team used computer-based simulation techniques (borrowed from MIT) to model possible global economic and ecological futures as they tracked along the intersecting lines of population, industrialization, food supply, depletion of nonrenewable resources, and pollution. In 1972, the team published the influential (and inflammatory) book The Limits of

Growth, which predicted a global recession and a slow descent into environmental catastrophe as industrial production and human reproduction ran up against the environmental boundaries of growth (Ross 1991: 185). The authors of the study suggested that the only solution to this impending descent into disequilibrium and eventual chaos was to rein in industry and population at a global scale.

As environmental and political concerns converged with economic anxieties about the unsustainability of industrial modes of production, it became increasingly clear that there would have to be a massive economic restructuring. Industries were depleting nonrenewable resources and adding to the massive build-up of non-biodegradable pollutants and toxic waste that were actively degrading biological life. These processes of bioaccumulation (the accumulation of chemicals in an organism that exceeds the organism’s ability to process or expend them – in short, a slow process of poisoning) were beginning to expose the lived limits of financial accumulation in the industrial sector at a global scale. These bleak ecological-economic forecasts were unfolding in tandem with a rising set of economic restraints and policy regulations that impacted major petrochemical and pharmaceutical

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industries in the US. The environmental movement had led to more stringent FDA standards for pharmaceutical research and development and firmer EPA regulations on chemical commodities and pollutants generated by production, which spiked the financial costs of industrial manufacture of drugs and petrochemicals and radically reduced the scope of production and growth.

Rather than reining in production and returning to environmental equilibrium, however, these industries opted to put the environment to work. As early as 1969, economists such as Frederich von Hayek had begun to replace industrial development models of depletion, waste, and diminishing returns with biological models of self- organization, complexity, and regeneration (Cooper 2008: 44). “Biomimicry,” write the authors of the influential book Natural Capitalism, “can inform not just the design of specific manufacturing processes but also the structure and function of the entire economy”

(Hawken, Lovins, and Lovins 1999: 73). Within this “new political economy of nature”

(Prigogine and Stengers 1984: 203-9), chaos, disequilibrium, and exponential growth reigned supreme. Thus, disequilibrium and chaos became the governing laws of markets and bodies, rather than the apocalyptic exception. Within this shifting economy of life, the biological sciences became the metaphor and the method to move life “beyond the limits” of growth

(Cooper 2008: 24) and “remak[e] every crumb of detritus into new life” (Hawken, Lovins, and Lovins 1999: 73). Research such as Kornberg’s artificial synthesis of DNA made it feasible to “generate and capture [re]production itself in all its emergent possibilities”

(Cooper 2008: 24). Indeed, the word “resource,” the authors of Natural Capitalism remind us,

“comes from the Latin resurgere, to rise again. A true resource, in other words, is something that returns over and over again because it is part of a cyclical process” (Hawken, Lovins, and Lovins 1999: 146). While economists and environmental scientists alike turned to the

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environment as the new economic model and site of production, the flailing biochemical and pharmaceutical industries began to turn to the field of molecular biology to mine biological substance as a new site and source of commercial production. Overall, the remedy to the hazards of bioaccumulation was, well, bioaccumulation – moving the modes of production that were wreaking havoc on life into the domain of “life itself” as a new frontier of “clean” industry and “sustainable growth.”

Massive economic transformations and epistemic reconfigurations put mimesis – as an object (the copy) and as a process (repetition) – to work in molecular biology and in an emergent post-Fordist industry. The gene and cell became standardized as technologies and as modes of production, while the hype and hope of science futures became the financial bread and butter of a growing “affective economy” (Ahmed 2004; Murphy 2012) that trafficked in promising life. Of course, the living labor of biological life has a much deeper history in breeding and agriculture (Franklin 2007), but what shifted dramatically between the 1960s and 1970s was the ability to routinely maintain, manipulate, and make lively human substances outside of the living body at an unprecedented scale. As Hannah

Landecker has demonstrated in Culturing Life, the “disembodiment and redistribution of living matter from bodies to laboratories”(2007: 14) – from being sustained in vivo to living in vitro – was central to the rearrangement of the sciences of life in molecular biology over the course of the twentieth century. The rise of a living material culture of laboratory cultures – the new “glass and apparatus-bound immortality” of living tissues – in combination with the ability to generate new chimeric organisms through recombinant DNA, helped to transform biology into a flexible terrain of artifice and accumulation which enabled “mass reproduction” of life at an industrial scale (Landecker 2007: 16; see also Waldby 2002;

Thompson 2005; Franklin 2007).

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While previously artifice had been effaced or denied in scientific understandings of nature (but, as I have already pointed out, the laboratory theatre’s “culture of no culture” is, of course, the product of a willful elision of its own highly mediated conditions, which are required to access a seemingly unmediated, “pure” nature), now nature-as-artifice was being naturalized within a shifting terrain of science, life, and economy that sought increasingly to manipulate, model, remake, and accumulate biological processes beyond the boundaries of the body and ecology. As historian of science, Phillip Pauly notes “when serious biologists began to see themselves as designers and inventors of new things, the conceptual and practical significance of ‘nature’ began to evaporate” (1991: 286). The theatrical sleight of hand of the experimental sciences has always been using its vast apparatus of technologies, techniques, and subjectivities to produce knowledge objects that efface their own conditions of construction, and appear as though they have always already existed as given. Yet, increasingly, with developments in molecular biology, the natural-real was being diffracted through artifice as artifice. In short, a shift in the performance culture of science and biology was moving from a theatre of persuasion (which effaces the conditions of artifice which undergird the production of nature) to the theatricalization of science (which stages nature as a matter of artifice by revealing the conditions of its emergence in, through, and as artifice).

Biochemical in vitro systems would become the models for understanding in vivo processes

(Rheinberger 1997: 108), refracting the nature of our bodies back to us as part of (rather than seemingly separate from) the artificial conditions of an experimental system. Nature

“out there” as well as the nature of “the body” were becoming articulated in an interstitial material and temporal zone of reality; they appeared to be real, but the reality of their appearance was that they were “really made up” (Taussig 1993: 86) in laboratory cultures.

Meanwhile, the “real” practical applications of this research were increasingly being

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articulated in relation to possible futures and prospective values, rather than its present material capacity.

Across the disparate, yet interlocking spheres of laboratory research, economic recalibration, political transformation, and social upheaval, DNA emerged as a pivotal actor.

Indeed, in every domain, DNA was being called upon to perform. As numerous scholars have shown, performance is a generative practice and discourse that is operative at multiple registers of life, as it is differently at work in the co-production of aesthetic, social, political, technological, economic, and epistemic spheres. As Jon McKenzie (2001) has noted, in the historical present, cultural, technological, and institutional domains are all subject to the contradictory pressures to perform, while they are also open to the contingencies that attend performance’s failures. One of the basic tenets of performance theory in the 20th and 21st centuries, drawing on histories of engagement with mimesis at the foundations of Western civilization, is that performance, as constitutively “restored” or “twice-behaved” behavior

(Schechner 1985: 36), is engaged in complex operations of doubling, copying, reiterating, repeating that play across times and between bodies, destabilizing any singular claim to the really real. As such, Performance Studies offers a capacious theoretical apparatus for thinking about the living labor of the biological copy as it is articulated at the interstices of social and scientific realities. DNA – as an object, a resource, a technology, a commodity, a future, and as “life itself – is a temporally and ontologically promiscuous object that is performed across multiple institutions, practices, and imaginaries. And, crucially, it is always already composed in repetition.

In many ways, molecular genetics is a science the copy; it is a practical and technological inquiry into the biological art and act of again-ness. Deliberate doubling is its object of study as well as its practice of study. Within molecular biological research, DNA is

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always composed as an “attribute of [its] representations” (Hacking 1983: 136) such that the

“reality” of DNA becomes possible only through its articulation within a system of modeling, manipulation, and purification. “The scientific object is re-presented in being produced; it is re-presented in the sense of a repetition, an iterative act” (Rheinberger 1997:

12). And this reality is itself only realized as such through a theatrical relation to ontology in which the “real” is understood as that which is composed in a space and time off of itself: repetition and artifice are the origin of the copy’s non-origin. In short, DNA emerges as

DNA and therefore is DNA through a diffractive relation to itself, as a copy that is only insofar as it is represented as. In molecular biology, the artifice is the nature that we seek to understand; there is no original nature being cited by the laboratory copy. The object does not precede its production in vitro, but is rather “birthed backwards” (Schneider 2001) through artifice as a natural product of the enduring genetic past.

In the following section, I go back to begin again in 1968 when one particularly fraught component of DNA – the BRCA gene – was dancing at the edges of knowability in

Mary-Claire King’s research at UC Berkeley. Much of the work of naming and locating this epistemic object and cultural artifact took place around the gene, rather than through it; it emerged at the interstices of the possible and the actual, as it was slowly materialized through multiple modes of knowing and mechanisms of anticipation.

Code

We are the children of Jim Watson. - Mary-Claire King, describing her generation of human geneticists, quoted in Waldholz 1997

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I’ve never believed that our way of thinking about science is separate from our way of thinking about life. We are all political animals. - Mary-Claire King, quoted in Noonan 1990

[Epistemic things] derive their significance from their future, which is unpredictable at the real time of their emergence. They are constituted by recurrence. - Hans-Jörg Rheinberger 1997

Mary-Claire King epitomized the new researcher that was emerging from within the shifting moral and political economies of biological science in the late 1960s and early 1970s.

The objectivity of the modest witness – as passionate disinterest and self-invisibility – was giving way to the transparency of the immodest witness – as passionately interested and visibly subjective. Many of the younger generation of researchers entering the life sciences were coming from the protests and teach-ins and sit-ins with a strong combination of purpose and personality; many of them had vested political interests in preserving the environment, were engaged in the civil rights movements and anti-war protests, and had been trained in medicine or engineering, bringing with them a strong commitment to finding novel, useful applications for pure science research (Vettel 2006). Notably, more than ever before, women were also entering the research field, following developments in civil rights and a move toward applied research, which put pressure on the sciences to provide equal employment opportunities in policy, if not entirely in practice.24

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 24 In 1972, President Nixon enacted the Equal Employment Opportunity Act, which reduced some hiring discrimination in the sciences, although it would take a long time for the field to become more equal in everyday practice (Vettel 2006). Before this act and other science-specific policies were passed, it was common to consider applied science women’s work. Kornberg and many others from the old guard of science had considered women to be better in the practical and applied sciences because they were less intellectually demanding and more attuned to the role of the “body” in research (Rossiter 1995; Wexler 1995). Conversations about the “glass ceiling” for women in the sciences continue to this day, although in the applied sciences (medicine, genetics), women are far more well-represented than in other sciences such as physics or engineering.

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King was all of these things. During her time as a graduate student in epidemiology and molecular biology at UC Berkeley, she had been an active organizer and demonstrator in anti-Vietnam War protests and had taken a break from graduate school to work for Ralph

Nader’s consumer advocacy organization on environmental issues related to pesticides.

King’s first proposed thesis project was to attempt to detect mutations in humans who had been exposed to DNA-damaging chemicals in the environment, to try to determine how damaged DNA could lead to cancer (Davies and White 1995: 56). However, this proved to be too unwieldy a task, so she instead attempted to study the genetic differences between human and chimpanzee DNA. King graduated with her doctorate in 1973 with a groundbreaking thesis that proved that humans and chimpanzees share 99 percent of the same DNA (published in Science magazine in 1975). She then moved to Chile shortly thereafter on a Ford Fellowship to help set up medical research centers, but had to return home to California within months due to the massive and violent coup that saw the abduction and murder of many of her colleagues and students.

In 1974, King soon took up a postdoctoral position in cancer epidemiology at

University of California San Francisco. Her project was to survey large populations of breast cancer patients and to try to determine which environmental risk factors these breast cancer patients had in common. King recalls that “I was seeing double, trying to categorize all the possible risk factors” in this large sample of cancer patients (Waldholz 1997: 101). But after spending a good deal of time sifting and sorting through the components of breast cancer risk in thousands of patient surveys, King notes that “In so many women, the only shared risk was that some very close relative – a sister or mother or grandmother – also had breast cancer” (101). Although there were other notable factors such as age at first pregnancy and

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consumption of dairy fats, King suggests, “given my background [in genetics], it’s understandable that I homed in on inheritance” (102).

In 1975, King attained a tenure-track position in UC Berkeley’s School of Public

Health due largely to new hiring policies regarding women and minorities. As King recalls, when she accepted the job, the male head of her research division informed her, “I just want you to know that you are only here because of all of these new regulations, and we are really scraping the bottom of the barrel in hiring you” (Gitschier with King 2013). Once settled into her new position in the division of epidemiology and genetics after her gracious welcome, King began to undertake research into the possible genetic link to breast cancer in some families with high rates of diagnosis. At the time, there was very little support for her hypothesis and an even more limited technological capacity to begin to trace this putative breast cancer gene. Through pedigree analysis, it was possible to determine that certain diseases such as cystic fibrosis or Huntington’s had a clear pattern of Mendelian inheritance and molecular biologists were working industriously to locate the genetic mutations that were at their root. However, breast cancer did not align with these patterns of inheritance.

While it did appear in certain families with irregularly high rates, it was not possible to follow breast cancer through a pedigree and see that it was either inherited as a dominant or recessive trait. In some ways, it appeared dominant, but there were always exceptions to this rule of inheritance; some people who may have inherited the putative gene never expressed it (never developed the disease) and some people who hadn’t inherited the gene developed cancer sporadically (without a genetic predisposition). Further, breast cancer was such a common disease, caused by so many complex and unknown factors, that most researchers attributed high rates in certain families to some combination of chance, possible genetic susceptibilities, and shared environmental risks. Nonetheless, as an epidemiologist, King

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insisted on the statistical relevance of the consistently high risk patterns among women who had one or more close relatives with breast cancer, and the risks spiked even higher if those relatives had developed cancer before menopause and had developed it in both breasts (c.f.

Anderson 1972; Lynch et al 1978). “These women appeared to have something more powerful at work than environment or lifestyle,” King recalls. “It was likely a gene or set of genes inherited by some relatives and not by others” (Waldholz 1997: 106).

King was a staunch advocate for women’s health and was motivated to undertake research that would potentially help to reduce women’s suffering from such a common and dreadful disease and to increase treatment and prevention options at a time when radical mastectomy and radiation were the norm (not that much has changed in the past several decades). In the moment when she began to undertake this research, she was pushing against the epistemic grain, critiquing aspects of the scientific practice of which she was a part, and attempting to scientifically validate an experience that many women lived as true, but that was generally dismissed as false within her field of research. Writing from a position of retrospection in 2014, it could be easy to critique her work as enabling pursuant cultures of commercial gene testing and personalized medicine that have come to crucially structure genetic knowledge and to undermine the political and environmental claims to health as a social justice issue that animated many of the social movements of the late 1960s. However, the unfolding of her research and the affective economies in which it was ultimately articulated point to a far more uneasy and complex set of relations between feminist and counter-cultural strategies in technoscience, and their shifting political economic landscape in which they unfolded. In her work on the feminist self-help movement in California from the same period, historian Michelle Murphy points to the ways in which the field of lay and expert technoscience was

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a skein of appropriation and reappropriations, of antagonistic yet enabling relations, of counter-conduct entangled with emerging economic values, that together animated affective entanglements as, on the one hand not merely economic, and on the other hand, not merely epistemic or oppositional (2012: 93).

There was no inevitable course that counter-cultural and counter-epistemological strategies took toward economic determinism or political freedom; and while the practices that unfolded in this uneven terrain were “non-innocent,” in that they were all embroiled in a field of political forces and economic production, they are irreducible to a singular historical rendering of either their revolutionary potential or their neoliberal demise.

Over the next sixteen years, King and her colleagues would begin to work across a range of “experimental systems,” to borrow Hans-Jörg Rheinberger’s term (1992), failing and groping and repeating, as they began to trace the outlines of this genetic possibility, working around the object in order to establish its existence. For Rheinberger, experimental systems are “future-generating machines” that produce the conditions through which to bring forth something as-yet-unknown, “something which does not exist in the form in which it is going to be produced” (319). The “epistemic thing,” or what Bruno Latour calls a

“quasi-object” (1993), does not yet have an (apparently) autonomous existence, nor is it materially or epistemologically defined; “it has the precarious status of being, in a way, absent in its experimental presence” (310).

The first experimental system that King and her research fellows generated was a well-established one: the pedigree. They piggy-backed on a larger National Cancer Institute survey in order to amass family histories from a large number of breast cancer patients, and then arrange this information into cancer pedigrees that could be analyzed to find a statistically consistent pattern of genetic inheritance – either dominant (the disease is expressed in those with one gene inherited from either parent) or recessive (the disease is expressed when the same gene is inherited from both parents). King had read Henry Lynch’s

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articles on “cancer families,” and also contacted him hoping to gain access to his family pedigrees and DNA samples. Lynch’s detailed family histories would be invaluable resources for King and she felt that “it was clear that he wasn’t certain how to take the data further and map a gene” (107).

In ensuing years, King and her research team managed to build additional pedigrees by contacting 1579 women in the Bay Area who had recently contracted breast cancer, and interviewing them about their family cancer histories (King 2014). Then King and one of her graduate students, Beth Newman, analyzed all of this family data in a computer program called POINTER, which calculated the likelihood that that the disease was correlated with major genes, gene-gene interaction, environment, or age. Of those nearly 1600 women, King and Newman determined that four percent had developed their cancer through some dominant mode of genetic inheritance (Newman et al 1988). They then selected 23 families, consisting of 329 relatives, from this cohort who demonstrated the highest rates of breast cancer, indicating a strong genetic component of the disease (Davies and White 1995: 92).

While those pedigrees told stories of likeness and loss for many of the women whose lives were figured in the circles and squares of these pedigrees, within King’s lab the pedigrees were being asked to tell a different story. This is often the case with experimental systems: any one system often “contains more stories than the experimenter at a given time is trying to tell with it” (Rheinberger 1992: 310). For King, the hope was that through these pedigrees, she could trace the clear outlines of a causal genetic link to cancer. Through mathematical modeling of the pedigree information, she slowly began to narrow a genetic pattern of dominant trait inheritance to many of the cancer families. While this evidence pointed to the possible existence of a cancer-predisposing gene, it did not definitively prove its existence within the genome, nor did it explain how a gene could lead to cancer. According to King, at

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this point, “the model was purely mathematic, and the gene was, of course, hypothetical”

(King 2014: 1462). As in diffraction, the pattern that could be traced through the family histories and abstracted into probabilities gestured toward the recorded effects of a possible gene, rather than its concrete scientific materiality.

During this same time, King and her colleagues began to attempt to map the gene, groping through these families’ DNA samples, looking for a single mutated segment in a sea of roughly twenty to twenty-five thousand genes, along 23 chromosomes that make up the human genome. In the late 1970s, there were very few standard procedures for locating genes and much of the genome was unknown territory, but King drew on her previous research on differences between chimp and human DNA. For this research, she attempted to compare “polymorphic gene markers” in patient families. These are small segments of

DNA that are known to have variations in the sequence of nucleotides (these are the bases of DNA that “spell” out variations of GATC). These markers vary in human population either in size or structure, and have already been located in a gene on one of the chromosomes, so it is possible to trace patterns of inheritance through them. For example, if a father has one variation of the marker for blue eyes, while the mother has a marker for brown eyes, it is possible to follow that marker on the eye color gene in future generations, mapping how the gene was passed from the mother or the father to their offspring. The geneticists at King’s lab would pick a small segment of DNA containing a known marker from all of the family members, isolate and purify each fragment, repeating this four times to attach a radioactive dye to each of the four bases, and then place them in agarose gel

(basically Jello). When they sent an electrical current through the gel, the DNA molecules would travel toward the bottom at different rates depending on their size, and it would become possible to infer sequences of the bases in these radioactive records of movement

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when they were held up against a piece of x-ray film (Figure 6). In figure 6, the rows show different variations of bases (the traces of the bases are the light marks on the film) in each of the DNA fragments.

Figure 6. X-ray image of DNA samples in agarose gel electrophoresis. Bassam Lajin, Amal Alachkar, and Sakur A. Alhaj, 2012, North American Journal of Medical Sciences

By checking the patterns of variants in this particular sequence fragment in family members against the family medical history in the pedigrees, they could see if the patterns of disease aligned with the patterns of variation on the film. If the same marker was consistently found among affected members in multiple cancer families and it was generally absent in those family members who did not have cancer until old age, then the marker would serve as a proxy for tracking the unknown disease-causing gene. The marker could be a proxy because it would likely be so close on the chromosome to the putative cancer gene that both genes

(the known marker and the unknown cancer gene) are inherited together, or “linked.” This process of “linkage analysis” was numbingly tedious and repetitive, taking up to two weeks

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to isolate, fragment, visualize, and piece together the sequence of one tiny randomly selected portion of a chromosome, and then compare it to the patterns of inheritance mapped onto the family pedigrees to see if there was any connection. King’s lab researchers had little luck, as they were fumbling toward their fuzzy gene object, hoping it would emerge at the interstices of these representational practices.

By 1980, geneticists working at the University of Utah had figured out how to generate more of these proxy markers sprinkled throughout the human genome that could serve as “genetic landmarks” in the mapping of nearby disease genes. Mark Skolnik and several colleagues, who had been “gene-hunting” within large Mormon families, discovered that tons of sites all over the genome have slight variations in the sequence from person-to- person. For example, one fragment might be composed of the following sequence of base pairs:

G A G T C T T T C G C A A T A G

The same fragment in another person might have certain bases inserted or deleted through a copying error, as in the section underlined below (sample sequences taken from Waldholz

1997: 128):

G A G T C T T T A T C A G C G C A C T A G

Using a special form of enzyme called a restriction enzyme that recognizes and cuts (actually digests) the DNA wherever specific short sequence variations occur, it became possible to fragment these small variable sections of DNA at regular intervals along the chromosome

(Botstein et al 1980). These RFLP’s (restriction fragment length polymorphisms) covered the entire genome and could be used for more methodical movement across different sections of the chromosomes of families in order to track patterns of genetic inheritance. Shortly thereafter, another form of marker, the VNTR (variable number tandem repeat), was also

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found, in which there were regular repetitive patterns on short segments of the DNA that consistently vary in their number of repetitions between individuals (e.g. a mother might have a VNTR of CACACACA, while the father’s VNTR is a shorter chain of repeated bases such as CACA) (Nakamura et al 1987).

Now it became possible to search with more accuracy for many more proxy mutations that could be inherited along with a disease-linked gene. In ensuing years, King and her colleagues examined hundreds of these DNA probes for “any gene we could imagine might make sense,” recalls King, repeating the exact same process of tracing with different markers ad nauseam. And yet, she says, when they compared the modes of transmission in the markers to those in the pedigrees, over and over again “the results were negative” (Roberts 1993: 623). “It’s a popular fiction that I knew all along what I was doing,” says King. “It really was not a linear path at all. In fact, there was a great deal of stumbling, of false starts” (Waldholz 1997: 56).

Failure is an essential part of any experimental system; the practice of generating the conditions for the possible to enter into a grid of intelligibility runs on deferral, inertia, and partial knowledge (Ronell 2005). As King tells the story, her gendered invisibility in part made it possible for her to keep failing and failing again:

You know, when I was young and just starting out, there really were very few women in the field. We weren’t taken very seriously. So when I declared that I was going to find this gene I don’t think I was taking that great a risk. Nobody expected much of us; I didn’t expect much either. I had the luxury of failing, and of failing over and over (Waldholz 1997: 56).

For over a decade, King quietly persisted in her attempts to generate different genetic scenarios through “blind tactics and empirical wandering” (Derrida 1982: 7) that might make room for her elusive research object to take form, as it quivered in the space between the possible and the actual. Yet, she was beginning to come up against even more obstacles, as

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her research was exhausting the blood samples that they needed for the DNA marker tests.

Because King and her colleagues were working with families who were riddled with a fatal disease, it was not always possible to get fresh blood samples from which to extract DNA, as some of the women with breast or ovarian cancer died over the course of the research. In these cases, King could only reconstruct the woman’s genotype if she had four or more surviving children who could donate blood (Gitschier with King 2013). Because of this barrier, they had to cease research on some families, and were having trouble locating and enrolling new ones. This, as King recalls, was a “terrific problem,” but one that was inadvertently solved by Nancy Reagan (ibid).

In 1987, as King and her colleagues were tirelessly tracing random markers through

DNA segments and then trailing them back through family cancer pedigrees only to reach dead end after dead end, her fugacious research object began to get articulated in relation to another “future-generating machine”: the popular press. Between the mid-1970s and mid-

1980s, breast cancer had begun to enter into public awareness, shaking off some of its stigma as a series of major political figures publicly disclosed that they had developed the disease including Betty Ford, Happy Rockefeller, and Marvella Bayh (wife of Senator Birch

Bayh). During this time, other women began to publish books about their experiences. In

1976, Betty Rollin and Rose Kushner both published breast cancer memoirs, and four years later, Audre Lorde’s forceful account of her own experience of breast cancer, The Cancer

Journal, came out. So, in 1987, when President Reagan announced his wife’s breast cancer diagnosis on national television, news stations scrambled to find interesting stories about the disease. The ABC television network dug up an interview that Mary-Claire King had given earlier that year about her search for a putative breast cancer gene as part of an anniversary special on the National Cancer Institute, and later that same day, 125 affiliates of ABC aired

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the interview. In the interview, King spoke about her research into a possible genetic link to breast cancer and stressed the necessity of locating more breast cancer families to share their family histories and donate blood samples to her study.

Within days, over 3000 women (including Annie Parker) contacted King about their family histories, and social interest in these quasi-objects began to peak. King was ambivalent about this outpouring of research support from families: as a scientist, she was

“overjoyed” to learn of these families, since they “made the case for the gene very strong.”

But it was also “very upsetting.” There were far more questions at this point than there were answers: “We couldn’t tell [them] if [they] had a gene for certain, nor could we tell [them] if

[their] children were at risk” (Waldholz 1997: 216). Meanwhile, for the thousands of women calling in to enroll in King’s research, some were realizing for the first time that the cancer that had decimated their families might be linked to a gene that would put their children at risk, while others were getting tenuous confirmation of what they already knew: that cancer ran in the family.

During this time, the tenses of discovery multiplied across these different theatres of representation, as the quasi-formed breast cancer gene (they only thought there was one at this point, not two – BRCA1 and BRCA2) was synchronously staged in radically divergent times of emergence. In popular media, the gene appeared to be already there in the genome, waiting to be located by a “gene sleuth”; it was no longer simply possible, but actual. Yet, in

King’s lab, it remained a fuzzy possibility, an inarticulate future dancing at the edges of pedigrees and DNA markers, but refusing to cohere into a tangible genetic presence. For many of the women whose family histories and blood samples were being taken, breast cancer was already deeply knit into the fabric of their bodies and relations, but the prospect

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of a genetic cause took on an affectively dense presence that had the potential to rewrite past losses and recast uncertain futures.

In 1990, these various gene imaginaries began to converge and harden into the contours of a concrete knowledge object. King’s team was examining a VNTR marker on the long arm of chromosome 17 and in some of the families, the pattern of inheriting one particular variation of this repeat seemed to correlate with patterns of developing cancer.

They quickly ran tests for three other markers in a similar region of the chromosome to see if the pattern held. It did. But it wasn’t consistent. Only seven of the twenty-three families had results that were aligned with the inheritance of a cancer-linked gene somewhere close to the marker. King recalls that they would find “a smattering of small positive results [for some families], some really negative results, then suddenly some very positive results. I couldn’t make any sense of it” (Roberts 1993: 623). And then King’s graduate student suggested that they organize the pedigrees and DNA markers from the families by age of cancer diagnosis, assuming that families that developed cancer at younger ages were more likely to have a hereditary form of the disease. “Everything fell into place,” says King (ibid).

In those seven families with early-onset breast cancer (before 45), women who developed the disease also carried the marker. In the other families with diagnoses at later ages, the disease was likely due to a range of factors that were not reducible to a strong hereditary component. They had found the general location of the gene; it was one of several hundred genes that reside on the long arm of chromosome 17.

King presented these findings at the conference for the American Society of Human

Genetics and published them in Science (Hall et al 1990). While she hadn’t located the actual gene, she had compelling evidence that there, in fact, was a breast cancer-predisposing gene that accounts for roughly 5 percent of cancers. Most of the major geneticists in attendance at

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her talk had been very skeptical of King’s research pursuit, doubting that cancer could be a simple genetic disease. Some had even accused her of fabricating data in previous publications. But by the end of her presentation that day, King remembers that even some of her most serious critics acknowledged, “It may be real, it may not be real, but it’s absolutely plausible” (Davies and White 1995: 98). Within months, Gilbert Lenoir and

Steven Narod from the International Agency for Research in Cancer (IRAC) in France tested the same marker in the Henry Lynch’s cancer families and found that the particular locus on chromosome 17 was linked not only to breast cancer, but also to ovarian cancer

(Narod et al 1991). In his typical immodest fashion, James Watson weighed in, grandly suggesting that King had “just made one of the most important discoveries in gene mapping, maybe in all of medicine” (Waldholz 1997: 49), even though the actual gene had not been discovered and they had no clue what it actually did. King was now given the go-ahead to the name her gene, since its existence was deemed likely enough for it become a recognized entity; she called it BRCA (which stands for both Breast Cancer and Paul Broca, the French surgeon who first began to create breast cancer family pedigrees in 1866).

From this point on, the breast cancer gene entered into existence in the doubled time of furious speculation and tedious experimentation, as it became materialized as the already existent discovery that was simultaneously yet to be discovered. A combination of affect

(hype) and artifice (cloning) began to structure the conditions of the gene’s future emergence in the present. BRCA was attracting much global attention and became the object of intense research in molecular biology, as over one hundred scientists in at least a dozen labs in

North America, Europe, and Japan began to attempt to locate the exact coding region of

DNA that expressed the gene and then clone the gene itself (King 2014). James Watson approached King and encouraged her to collaborate with the major molecular biologist at

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University of Michigan, Francis Collins. Collins was Watson’s soon-to-be successor as director of the federally-funded Human Genome Project, which had been initiated in 1989,25 and he had pioneered a new technique for “chromosome jumping” called positional cloning that had enabled him and his collaborators to locate and clone the single gene mutation responsible for cystic fibrosis in 1989. King was a skilled geneticist and epidemiologist, but lacked the training in molecular biology that would enable her to clone genes, isolate RNA and reverse transcribe it into cDNA (this form of DNA only has the regions that are known to code for gene expression), or build libraries of cDNA (in which segments of cDNA are stored in living bacterial cultures such as E. coli or yeast) – all crucial techniques for materializing the speculative gene. Watson reminded King of how important his collaboration with Francis Crick was in discovering the double helical structure of DNA, insisting “I needed a Francis, and so do you”(Waldholz 1997: 52). King agreed and her lab began to collaborate with Collins’s lab at the University of Michigan in 1991, and also extended her pool of partners to include Anne Bowcock at the University of Texas

Southwestern Medical Center and Jeff Boyd at the National Institute for Environmental

Health Sciences.

The fundamental thing about BRCA is that it was necessarily both there and not there in the research process. At this point, it was said to exist, but it was not yet materialized, and the slippage between these two states of emergence – this theatrical ontology – was crucial in building experimental systems, garnering public support and participation, and securing funding to continue research. Between 1990 and 1994, there were

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 25 The Human Genome Project was set up to identify the entire sequence of all three billion base pairings of human DNA and map the genes that are expressed by those sequences. For Watson, the breast cancer gene was “a very big prize” that could “attract the very best in the field” and bring much-needed funding and publicity to the Human Genome Project (Waldholz 1997: 51).

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scads of interviews and reports about the gene’s future presence. In a New York Times interview from 1993, King says, “We’re obsessed with finding the gene,” pointing to its immateriality, its not-yet-ness. She then slipped into its material already-thereness, saying, “It could be in [the lab] right now, sitting on one of our plates [that is, the petri dishes containing cDNA segments]” (Angier 1993). While King was always very cautious with her speculations throughout the almost two decades of research up to this point, she was also a spokesperson for genetic discovery in an age that demanded a healthy dose of immodest witnessing. In her public statements, she worked seamlessly to knot registers of possibility with actuality, giving epistemic form to her research object as both a scientific and social artifact.

In the laboratory, researchers were combing through tons of stretches of purified and fragmented DNA on chromosome 17, working across multiple registers of artifice to actualize their research object: the lab-generated trace of a copy of a mutated gene that could be traced through family cancer genealogies. Through a complex experimental apparatus that enabled them to make and manipulate DNA samples, they looked for a telling error, an anomaly that occurred in the sequences extracted from living breast cancer patients or dead patients’ tumor tissue (King called this “linkage among the dead” (Roberts 1993)). Once the mutation was found in the stretch of DNA, they would isolate the gene that surrounded it and then compare this anomaly to the genes of other family members with cancer to determine if it signaled a mutated gene that was causing cancer or was an innocuous variation in the nucleic acid sequence. A lab associate working with one of King’s competitors in Utah, Mark Skolnick, recalls having numerous “gene scares” in which they thought they had found the cancer gene. According to Donna Shattuck-Eidens, who worked in Skolnick’s lab, researchers would go for days or week thinking they had “latched onto the

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gene” and then “each time it turn[ed] out to be a false alarm” (quoted in Waldholz 1997:

213). Nonetheless, she says, “I could feel its presence” (211).

Skolnick was also trading on the gene’s absent presence in order to finance his research. After being denied an NIH grant to undertake research into localizing the BRCA gene (federal research funding for science was shrinking again), Skolnick had turned to the private sector. In 1991, Skolnick, along with Peter Meldrum (who had previously owned an agricultural biotech company) and Walter Gilbert (Harvard biologist) co-founded the biotech company, Myriad Genetics, Inc. and managed to secure start-up funding from a few venture capitalists including Kevin Kimberlin and secured $1.8 million from the pharmaceutical giant

Eli Lilly. Pharmacogenomics was a growing field, and n exchange for the capital, Myriad would give Eli Lilly exclusive licensing rights to develop medicine based on the breast cancer gene if the researchers at Myriad were able to locate it first and secure a comprehensive gene patent. This was one of the first private companies created with the sole goal of seeking out common genes that underlie common diseases — specifically BRCA— with the aim of generating future revenue for its investors by licensing future rights to the future-present genes to drug companies and creating a commercial gene test to sell to future consumers who would want to know the risk for genetic disease in their futures.

By 1991, this type of venture science was becoming increasingly common in the field of molecular biology, as research was embedded within the shifting strictures of a political economy of bioaccumulation that had been solidified in the late 1970s and early 1980s through policy reforms, corporate tax-breaks, loosened research regulations, and strengthened patent protections (Vettel 2007). This assemblage of reforms enabled the development of a science-industrial complex marked by quicker transfer of bench findings to bedside therapies, more university-industry partnerships, and a larger commercial market

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for healthcare. Disease genes were at the heart of this enterprise, as they held out the possibility of generating new medically and financially generative treatments and technologies for intervening in disease. As Harvard molecular biologist and former vice- president of pharmaceutical giant Merck & Co. Stephen Friend noted (with a note of hype),

“Each new gene or set of genes opened a scientific door to these unknown disease pathways and targets” (Waldholz 1997: 92).

In spite of the willingness of molecular biologists and geneticists such as Skolnick,

Gilbert, and Friend to embrace this shifting economy of science (indeed almost every major biotech company founded between the late 1980s and 1990s was built around a university scientist’s work), this transformation was unfolding unevenly and was a major point of contention in the research community. As the competition to locate the BRCA gene stiffened with the entry of a well-funded commercial laboratory, some university researchers bristled. British scientist Bruce Ponder registered concern about what would happen to this decades-long collaborative and largely publicly funded research endeavor if the gene was patented, saying “I worry about what Myriad will do if it finds the gene. The investors will want a profit from the discovery and that could pose all sorts of problems” (ibid). One foreseeable problem would be Myriad’s enforcement of their patent to limit access to the genes to researchers and patients alike, which could have disastrous consequences.

Meanwhile, King worried that the increased competition was interfering with the ultimate goals of the research. “Calling it a race or a contest,” she remarked, “is just an awful way to describe what we’re doing, especially when you think about the women who are depending on us” (93).

During the course of 1994, the event of the gene’s enactment as a concrete gene- thing unfolded in anticipatory fits and starts through multiple imaginaries. Rumors kept

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circulating that the gene had been found, leaving researchers reeling, as they would skip ahead to the aftermath of the gene’s “discovery” only to drop back to pick up research toward the discovery again when it was found that the gene discovery wasn’t the gene discovery. In March 2014, word spread that Francis Collins had scheduled a press conference to proclaim that he and King had cloned the BRCA gene, leading to a flutter of excitement and disappointment in labs across the US and Europe. It soon became clear that

Collins was actually organizing a press conference to announce that two other scientists had located a colon cancer-predisposing gene, HNPCC. The next week, news spread that a biologist in Scotland had cloned a protein marker called CA125 that was expressed in breast and ovarian cancer cells in cancer families. This was the BRCA gene. Shortly thereafter, King ended up showing that it couldn’t be the BRCA gene because it didn’t appear to be damaged in breast cancer patients (Davies and White 1995: 154). Later that spring, King and her colleagues had located a gene fragment that they named Odo (at this point, they had taken to naming their DNA segments after Star Wars characters) that showed consistent variation in some family members with cancer that differed from the variant found in family members who had not manifested the disease. It was, perhaps, the BRCA gene. However, after a few weeks of analysis, they realized that the variations did not lead to crucial coding errors that would hamper the functioning of a gene. Another false alarm. Around this same time, in

Skolnick’s lab Shattuck-Eidens found a slight variation in a gene fragment from a member of a family who had cancer and began comparing multiple samples of the different family members’ gene fragments. By late July, she found a “funny-looking gel” on her assistant

Tanh Tran’s lab bench. She noticed that the gel holding a pattern of bases from the fragmented gene showed a mutation in a region that appeared to be important in coding during replication. “A mutation in that area is a dead giveaway,” she recalls, since it would

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lead to crucial copying errors that could impair the gene’s function. It was, again, the BRCA gene. She later asked Tran why he hadn’t pointed out the mutation, and he responded that he thought it was just the trace of a mistake he made when he loaded the DNA samples into the gel (Waldholz 1997: 230-1). By the end of August, they had gathered more blood samples from the family and analyzed the mutations to make sure that the patterns of cancer and mutation matched and that the coding error did, in fact, hamper the functioning of the gene, and wasn’t simply a loading error. It all lined up. It was the BRCA gene. Errors beget errors beget facts. Notably, as early as April 1994 – months before the possible BRCA1 gene was localized – Skolnick’s biotech company had put out a press release anticipating their as- yet-unrealized discovery of BRCA1 and suggesting to investors that their potential exclusive rights over commercial testing for the cancer gene would offer “a multi-billion dollar market opportunity for the Company” (Rimmer 2008: 187). Speculations beget errors beget capital.

In early September 1994, Skolnick submitted patent requests and sent off two papers detailing his team’s findings to the major journal Science for peer review, but before the papers could be published, science reporter Robert Bazell of NBC News caught wind of the cloning of what appeared to be the BRCA gene and declared the discovery on NBC Nightly

News on September 13. A cascade of front-page stories in national and international papers ensued, declaring that scientists had found a “mutant gene” that was linked to breast and ovarian cancer in families. Shortly thereafter, a group of researchers led by Michael Stratton of the UK and David Goldgar of Utah (in partnership with Myriad) announced that they had honed in on the general location of a second BRCA gene on chromosome 13 that was linked to breast cancer in families. BRCA had doubled; there was now BRCA1 and BRCA2.

Meanwhile, the mangle of scientists who had been working to clone the gene scrambled to acquire data in order to determine if Skolnick’s lab had actually found the BRCA1 gene since

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none of his findings had been published, while simultaneously launching themselves back into the research process of pinpointing the location of the BRCA2 gene. This agitated unfolding of the BRCA genes’ syncopated emergence points to the shifting tempo of research and discovery within a changing performance economy of scientific research that was increasingly “out” about its constitutive theatricality.

Over the course of several decades, the BRCA genes were made real, were realized as scientific knowledge objects, through the coordination of their appearance through multiple modes of representation – pedigrees, press releases, radioactive traces, clones, promises, molecular markers, investments, models, blood samples, statistics, memoirs, bodies, and tumors. These stages of emergence were, in turn, deeply embroiled in a complex terrain of political, economic, and social transformations that were also unevenly unfolding across divergent and even antagonistic terrains of research and investment in the genetic sciences.

Within this plural and contingent biopolitical topography of the mid-to-late twentieth century, the ontological stakes of scientific objects and practices shifted. This heterogeneous history of the various actors, actions, and materials that were coordinated in the process of holding together the object of DNA touches on some of the constitutive contradictions of a science turned theatrical. The layered tenses and techniques of making DNA – as a simultaneously essentialized object of evidence and a non-essentialized articulation of artifice

– lay bare the shifting stakes of making knowledge and objects of life, as they are materialized through a more intimate relation to artifice, affect, accumulation, and ambivalence in the genetic sciences. Bruno Latour and others have shown how this deliberate and painstaking work of shuttling between mediation and stabilization has always been a central part of knowledge production in science and society’s “nature-cultures.” Indeed, the question of the centrality of mimesis to knowing, doing, and being goes is as old as Aristotle. Put simply, I

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suggest that transformations in the performance culture of science over the past thirty odd years have come to increasingly magnify and exploit this ongoing movement between and manipulation of orders of reality.

In the next chapter, I follow the BRCA genes from the bench to bedside, as I trace the uneven and unanticipated effects of genetic testing for women and their families. In the past decade, the scope of some women’s access to knowledge of their genetic risk has expanded with Myriad Genetics’ rollout of commercial BRCA testing, with the effect that the diagnosis of genetic risk has taken on many of the affective and medical dimensions of being diagnosed with disease. In this way, the theatrical ontology of genetics coils forward, as more and more women are faced with the possibility of surviving a disease that they do not have and may never develop.

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CHAPTER THREE

Not Not Cancer: ‘Previval’ and the Peculiar Privilege of Futurity

Figure 7. Joanna Rudnick prepares for a breast MRI as part of her high-risk cancer surveillance program. Film still from Rudnick’s documentary, In the Family (2008). (Courtesy of Joanna Rudnick and POV Films)

In 2006, at the age of 23, Stephanie Goldman26 had both of her breasts surgically removed to cure a breast cancer that she did not have. Six years later, she is grappling with the difficult decision to remove her ovaries in order to treat an ovarian cancer

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 26 This article draws on ethnographic research and critical media analysis I conducted between 2008 and 2012 in several cities in the United States. Names of patient informants have been changed to protect their confidentiality.

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that she does not have. Invasive surgeries such as these are generally undergone to intercept a clinically present, often aggressive cancer or to prevent the almost certain spread or recurrence of an already manifest disease. Yet, Stephanie is healthy. She has never been diagnosed with any form of cancer. Cancer has, however, decimated her family. Both her grandmother and great-grandmother died of breast cancer six days apart at the ages of 39 and 58, respectively. Stephanie never had the chance to meet them. Her mother, Nancy, was diagnosed with breast cancer when Stephanie was 12 years old. After many ravaging rounds of chemotherapy, Nancy survived the disease only to develop ovarian cancer 10 months later. Eleven other family members have been diagnosed with or have died from breast or ovarian cancer in Stephanie’s lifetime.

Because of this genealogy of morbidity, Stephanie and her mother decided to get a blood test in order to determine if there was a genetic link to the string of cancers in their family. There was. Both Stephanie and her mother had inherited a genetic mutation in their

BRCA1 gene. Mutations in the BRCA1 tumor suppressor gene have been found to statistically increase a female mutation carrier’s risk for developing breast cancer by 50 to 85 percent and render her 20 to 60 percent more likely to develop ovarian cancer.27 After discovering her hereditary cancer risk, Stephanie enrolled in a high-risk cancer screening regime — getting mammograms, breast MRI’s, and ultrasounds of her ovaries every six months in order to screen for any cancerous growth. While regular screening has been shown to help with early detection of cancer, such practices do not prevent the onset of the disease. Stephanie decided that she “just didn’t want to wait for cancer,” so her genetic counselor made appointments for her to meet with oncologists and surgeons to discuss surgical options, such as a preventive mastectomy and oophorectomy (surgical removal of !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 27 Some mutations in genes are known to inhibit their proper functioning.

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ovaries), which have been found to significantly reduce BRCA gene mutation carriers’ risk for developing cancer (Hartmann et al. 1999; Rebbeck et al. 1999; Meijers-Heijboer et al.

2001). Journalist Masha Gessen describes her own experience of this anticipatory mode of patienthood in her book Blood Matters: From Inherited Illness to Designer Babies, writing “I found myself carrying a cancer patient’s card, walking past wig-and-prosthesis shops on my way to see doctors and retracing my mother’s steps down the hospital corridors — still hoping that in my version, the same genes would add up to a better life” (2008:11). Like Goldman,

Gessen chose to retrace only a few of her mother’s steps through the cancer ward; she underwent a prophylactic bilateral mastectomy, removing her healthy breasts to preempt a future breast cancer diagnosis.

In the statistical sense, these genes don’t add up to cancer — BRCA1 and BRCA2 gene mutations increase susceptibility to breast and ovarian cancers, but they do not cause or even inevitably lead to the diseases. However, the urge to make the genes add up to something else, something other than or in excess of the cancer that has ravaged their families, is refiguring these women’s status as healthy and recalibrating the time of survival.

Goldman and Gessen are part of an growing population of women in the US and abroad who are discovering their genetic risk for cancer and opting to “previve”28 the disease. That is, they are surviving cancer in advance of its onset by surgically enacting treatment on their healthy bodies. This temporally fitful practice of surviving a disease that is not yet diagnostically present has emerged in conjunction with the expansion of a speculative market in genomics research and biotechnological development that has begun to link certain genes !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 28 This term was created by Sue Friedman, the founder of the BRCA patient advocacy organization, FORCE (Facing Our Risk for Cancer Empowered), in response to a group member’s insistence that “I need a label!” in an online message board. Other names suggested included “high risk,” “mutant,” “unpatient,” and “survivors of genetic risk.” Friedman coined the term “previvor” to capture the multiple ways people living with genetic risk are taking active steps to survive their predisposition to cancer (FORCE 2000).

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with disease. The localization of family illnesses to specific genetic mutations yokes past prognoses and healthy presents together, modifying common understandings of what disease is and where it is located. These genetic biotechnologies are recontouring illness by extending its parameters beyond the bounded “now” of an individual body through new formulations of shared, embodied risk.

Many clinicians, patients, and pharmaceutical companies have touted such developments as “lifesaving” and “empowering,” suggesting that new biotechnological tools like the genetic test for BRCA gene mutations are affording women the opportunity to survive a disease that has plagued their families. However, while genomic advances have been hyped as the promissory site of future breakthroughs in cancer therapy, the therapeutic options available to women who want to locate and manage their genetic cancer risk do not easily reflect these eager assurances. While women now have more specific knowledge of their risk for future disease in the shape of genetic predispositions and statistical probabilities, researchers are only incrementally closer to finding effective treatment and prevention options for those hailed by these risk figures. For those who are faced with the moral imperative to interrupt diseased genealogies by intervening in their hereditary cancer risk — or as Gessen puts it, for those who want to make their “bad” genes add up to a

“better life” — the therapeutic options are remarkably limited.29 Anthropologist Kaushik

Sunder Rajan refers to the disjuncture between the proliferation of genomic knowledges and

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 29 Recently, scholars such as Lauren Berlant have begun to critically rethink the unquestioned value of the “good life.” In her introduction to Cruel Optimism, Berlant asks, “Why do people stay attached to conventional good- life fantasies — say, of enduring reciprocity in couples, families, political systems, institutions, markets, and at work — when the evidence of their instability, fragility, and dear cost abounds?” (2011:2). Cancer previvors like Masha Gessen, along with medical institutions, patient advocacy groups, and pharmaceutical companies differently propagate fantasies of a good life in the discourses surrounding genetic testing and cancer preemption, even as they traffic in the instability of the very future which they hope to secure.

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the paucity of available treatment measures as a “therapeutic lag” in the expanding health market: diagnostic tests are developed by scientific researchers and disseminated by pharmaceutical companies far more quickly than the therapeutic treatments that would potentially benefit those who are found to be at genetic risk by these new biotechnologies

(2006:152). The treatment options surrounding the BRCA gene mutations exemplify this technological interval: at present, the most clinically “effective”30 way to reduce one’s genetic risk for developing breast and ovarian cancer is the surgical removal of healthy breast and ovarian tissues that may some day become the locus of cancerous cell growth. This invasive measure of carving out one’s healthy tissues and sex organs does not guarantee prevention or result in a cure. Since it is impossible to remove all of the tissue from the potentially diseased sites, one’s risk for developing the disease can never be completely eliminated even if it is significantly reduced (Lock 1998).

Much biomedical literature that examines the practice of surgical preemption has either focused on the medical efficacy of these measures in reducing cancer risk (Hartmann et al. 1999; Rebbeck et al. 1999; Meijers-Heijboer et al. 2001) or has grappled with bioethical questions about the treatment of a disease that is neither present nor imminent through invasive surgical procedures (Eisinger 2007; Morrow and Harris 2009).31 Scholarship in the social sciences has focused largely on differences in national healthcare systems that are !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 30 I put effective in quotes here to highlight the constructedness of such a measurement. As with any form of valuation, what is considered most effective in a biomedical context does not easily align with what might be valued as most effective in social, psychological, or bodily terms.

31 Official positions on the efficacy and ethics of this practice vary widely across regional, national, and international medical contexts (Löwy and Gaudillière 2008; Metcalfe et al. 2008). It is not my interest to contribute to these debates by morally evaluating women’s decision to undergo preemptive surgeries or adjudicating “best practices.” In keeping with much work in anthropology and performance studies, I begin from the premise that practices of body modification are ubiquitous, variable, and contingent upon a range of values, contexts, and experiences that challenge any easy biomedical construction of the patient body as an authentic, bounded, or intact entity that precedes modification.

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implementing the new genetic technologies (Parthasarathy 2007; Löwy and Gaudillière 2008) and on forms of sociality and patient activism that are emerging in relation to the BRCA genes (Finkler 2000; Gibbon 2006, 2007). Yet little attention has been paid to the particular ontological and epistemological dimensions of disease that characterize previval,32and its articulation within broader contexts of financial speculation and preemptive action. Recent work in anthropology and science studies has examined the interplay between social, economic, and political forces in the production of biomedical knowledge and technology, focusing on speculative practices such as imagining, promising, and threatening. This work has described how the manipulation of affect and time plays an increasingly prominent role in changing economies of knowledge and action in recent history (c.f. Tsing 2005; Sunder

Rajan 2006; Cooper 2008; Fortun 2008). Other scholars, such as anthropologist Annemarie

Mol, have illuminated how such modes of performance and forms of contingency are not only operative at the macro scale of biotechnological innovation, but are also present in everyday processes of diagnosis and treatment in medical clinics. In her ethnography of a common illness, atherosclerosis, Mol uses the term “enactment” to highlight the ways in which reality multiplies and orders of time shift as some thing called atherosclerosis gets performed in the ongoing medical practice of “doing disease” (2002). Drawing these theories and methods together in my ethnographic study of cancer previval in the US, this chapter examines the conditions through which immaterial disease — or a disease that is affectively present, but empirically absent — gets enacted in material registers on healthy women’s flesh, confusing conventional biomedical orders of time and modes of knowing.

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 32 See Margaret Lock’s article, “Breast Cancer: Reading the Omens” (1998), for a notable exception.

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Enacting Immaterial Disease

For women like Goldman and Gessen, their genetic risk transitions them from a condition of health to the unstable status of pre-patienthood in the clinic. Not yet sick, but not not sick, the “as if ” space of genetic risk suspends them in a vaguely defined disease state. This disease state is not marked by the empirical presence of pathology in the patient’s body, as is generally the case in medical diagnosis. Their status is instead characterized as a relative pathology shaped by a family history riddled with cancers and a statistical risk aggregate of other BRCA mutation carriers’ patterns of disease and demise. Through a peculiar play of time and relation, genetic risk charges these women’s symptomless bodies with a pathology that is not diagnostically theirs in a strict clinical sense, writing familial and actuarial pasts into an embodied disease script that is surgically re/staged on their bodies again and yet for the first time. Set in a time that has lost its discretion, familial cancers that have already come to pass are summoned forth in the genetic test and survived again by previvors who are surgically preempting cancer’s future realization on the clinical stage.

These treatment measures warp the linear process of clinical diagnosis and treatment, as the treatment for cancer precedes and preempts the very possibility of the disease’s diagnostic development. In this temporally fraught equation, the clinical “fact” of cancer is realized through its ontological ambivalence: women such as Goldman are living and acting in many ways as if they have cancer by undergoing treatment for the disease in the present, and yet they are doing so precisely in order not to develop cancer in the future. In the between-time, or “theatrical time” (Schneider 2011:6), of previval, the conditions of disease get performed across bodies in a moment that slips away from itself such that the time of diagnosis never arrives because the disease is performed in a moment in which it doesn’t

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clinically exist, playing one time on another time in the meantime.33 The fundamental “warp and draw of one time in another time” (6) that is performed in the process of materializing immaterial disease points to an increasingly theatrical quality of knowledge and action in the clinic. Indeed, it could be said that the biomedical object of immaterial disease is theatrical in that it is constituted through its own ambivalent relation to the so-called “really real.”

In suggesting that the formulation of immaterial disease is a theatrical fact, marked by a temporal fitfulness and a manipulation of orders of reality, I extend recent social studies of science that trace the ways in which messy, complex objects of knowledge and intervention such as disease are distilled, simplified, and made into coherent things-in- themselves, or matters of fact, through seemingly divergent techniques and practices of knowing that unfold over time. According to the Oxford English Dictionary, the privileged object of scientific knowledge, a “fact” is “a thing done or performed” or “the making, doing, or performing,” as in the very process of accomplishing a proper knowledge object as itself.34

Mol’s work traces this process of making-fact, demonstrating how some disease-thing that needs to be treated does not simply precede its clinical discovery but instead continually emerges, disappears, and reemerges out of an array of coordinated techniques, efforts, and realities that flit into and out of time:

If practices are foregrounded, there is no longer a single passive object in the middle, waiting to be seen from the point of view of seemingly endless series of perspectives. Instead, objects come into being — and disappear — with the practices in which they are manipulated. And since the object of manipulation tends to differ from one practice to another, reality multiplies. The body, the patient, the disease, the doctor, the technician, the technology: all of these are more than one. More than singular [...] they are related (Mol 2002:5). !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 33 I am indebted to Rebecca Schneider’s discussion of the “meantime” and theatricality’s syncopated temporality theorized in Performing Remains: Art and War in Times of Theatrical Reenactment (2011). 34 Oxford English Dictionary Online, “fact.”

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Orders of knowing, within this line of thought, are multiple, contingent, and often contradictory. There is no single, rational, empirically knowable thing (a disease or a body) that is coherent unto itself. This fact-thing must be continually coaxed into existence, into visibility, into evidence. It must be enacted. Time is central to such efforts. Certain elements may be foregrounded in some moments and obscured in the next, but these disparate parts do not disappear into a linear stream of time’s onward progression; they stir and slosh and swallow and surface in the uneven currents of knowing (Mol and Law 2002:12). This formulation of enactment as an ongoing process that cobbles divergent, yet related realities together to render a disease or a body coherent as fact is kin to the doubled again time of theatrical reenactment. As Rebecca Schneider explains, reenactment “is not one thing in relation to the past, but exists in a contested field of investment across sometimes wildly divergent affiliations to the question of what constitutes fact” (2011:56).

Multiple knowledges — both privileged and subjugated — come to constitute the disorienting theatrical fact of immaterial disease, an object of medical intervention that both is and is not present in one’s body, through modes of temporal dissonance. Swooping into and out of focus, seemingly distinct and even incommensurate epistemic orders such as statistical probability and incalculable potentiality, medical rationality and affective exchange, the bounded patient body and the embodied extension of familial relation, hold together as immaterial disease in moments thick with temporal interference as these techniques of knowing play off of one another. Frictive encounters of familial pasts, fraught presents, and forecasted futures destabilize easy claims about the singularity or unity of the real. Indeed, such attentiveness to the play of time at work in practices of previval sheds light on a broader set of temporal manipulations that animate dominant fields of knowledge and engagement in this historical moment. Actions geared toward conjuring and intervening in a

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moment that exceeds the present increasingly characterize the maneuverings of neoliberal expansion and late capitalist enterprise. As a mode of bodily adjustment that draws on pasts and acts out futures in an affectively dense present, previval might be understood as a fleshly inscription of multiple theatrical impulses that characterize the current reorganization of political and economic life in the historical present.

At Risk of Being At Risk

In her article, “Breast Cancer: Reading the Omens,” published on the heels of the scientific discovery of the BRCA genes in the late 1990s, Margaret Lock situates predictive genetics within a deeper genealogy of divination. Lock suggests that the genetic test is a technological articulation of a more general array of prophetic practices such as reading bones or interpreting dreams that have been integral to modes of rewriting pasts and scripting futures in human cultures across time and space (1998). Genetics, as a new divinatory technique, is intimately linked not only to these oracular traditions, but has also emerged in close relation to developments in actuarial and statistical sciences that draw on pasts both to predict and to protect against future losses. Indeed, over the past few centuries and culminating in the Industrial Revolution, the science of statistics has gained currency as the dominant divinatory tool that is put to the work of naming danger and taming chance by drawing on techniques of rational calculus (Hacking 1990) and gradually linearizing time

(Serematakis 1991). These temporal technologies of knowing and acting have been developed and altered in recent decades by technological innovations in the life sciences.

The result is a relative increase in practices of protection alongside the explosion of registers of potential danger, leading to increased attempts to manage insecure futures.

Sociologist Ulrich Beck was one of the first to theorize the emergence of a “risk society” wherein rapid technological innovation and the social production of wealth are

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bound up with the systemic production of risks (Beck 2000). Writing not long after the massive melt- down and explosion of the nuclear generating facility in Chernobyl, Beck notes that greater access to knowledge, profit, and technologies is paradoxically linked to the proliferation of risks. According to Beck, the potentially disastrous effects that attend these swift economic, ecological, and technological developments far outpace our ability to predict and protect against their potential harms. Such uncertainties and dangers lead to ever-greater attempts to secure the future against catastrophe even as our ability to do so diminishes:

[S]ince the middle [of the 20th century] the social institutions of industrial society have been confronted with the historically unprecedented possibility of the destruction through decision-making of life on this planet. This distinguishes our epoch not only from the early phase of the industrial revolution, but also from all other cultures and social forms, no matter how diverse and contradictory [...] If a fire breaks out, the fire brigade comes; if a traffic accident occurs, the insurance pays. This interplay between before and after, between the future and security in the here- and-now, because precautions have been taken even for the worst imaginable case, has been revoked in the age of nuclear, chemical and genetic technology. In their brilliant perfection, nuclear power plants have suspended the principle of insurance not only in the economic but in the medical, psychological, cultural, and religious sense. The residual risk society has become an uninsured society, with protection paradoxically diminishing as the danger grows (1992:101).

My own formulation of risk refuses such a totalizing argument for the dissolution of precautions as Beck’s, and focuses instead on the productive and at times contradictory inter-articulation between previously salient precautionary measures and newer forms of molecular knowledge and preemptive intervention.35 It is nevertheless productive to think about the present conditions of control and security operating in these registers of futurity !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 35 I follow the work of Bruno Latour in taking this position. In The Pasteurization of France (1988), Latour emphasizes epistemic continuities rather than the fractures or breaks that get privileged in epistemological models such as Thomas Kuhn’s well-known “paradigm.” As Latour develops a genealogy of the emergence of the microbe in Pasteur’s laboratories, he suggests that this groundbreaking development in microbiology would not have been possible without the institutional foundations of statistical analysis. It was this enmeshment of old and new knowledge formations that allowed Pasteur to predict the distribution of the disease, “anthrax,” caused by his microbes, and to develop a vaccine.

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and unknowability that imagine, and indeed necessitate, the possibility of protection even in the face of profound uncertainty. Following Beck and others, we can read this irruption of insecurity as intimately bound up with the twin neoliberal processes of whittling away systemic supports and globalizing capitalist terrains of profit. Such a trend is particularly evident in the expanding commercial market in biomedicine.

In the biomedical field, “health” is currently being redefined in relation to the joint proliferation of risks and the increase in future-oriented technologies of defense against possible disease. Health is no longer based solely on the absence of disease. In recent years, understandings of health have come to dwell in the elusive space of risk. The unattainable goal of providing greater protection against increasing risks has steadily become a vital source of value extraction in the US, with its sprawling pharmaceutical industries and speculative markets in disease and treatment. Expanding the territory of disease to include risk and calling on individuals to invest in and act on knowledge of potential danger, while simultaneously generating insecurity in those grasping for ways to insure against perilous future conditions, is financially rewarding from the perspective of the health industry. As anthropologist Joseph Dumit observes, “if health is defined as reducing risk, then health is an infinite phenomenon, since for every risk you reduce or eliminate, you still have a 100 percent risk of dying from something else” (2012: 49). Masha Gessen makes a darkly comedic gesture toward this irony when she relates a story about meeting with the director of the Cancer Risk and Prevention Program at the Dana-Farber Cancer Institute in Boston.

In the context of a suggestion that Gessen consider surgically removing her breasts in order to reduce her breast cancer risk, the writer observes that “The payoff, it seemed, was not so much keeping me here [i.e., alive] as increasing the chances that I would die of something other than cancer — whenever that happened. I politely suggested that I would shoot myself

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tomorrow: That would prevent my death from cancer with a 100 percent probability” (2008:

83).

Gessen’s joke that killing herself is the only surefire way to reduce her risk of death from disease illuminates the strange rationality operative within a market based upon what

Dumit calls “the accumulation of surplus health” (2012: 76). Biopolitical investments in the management and maintenance of population health have ceased to be guided by the need to provide healthy laboring bodies that will ensure the profitability, productivity, and security of the state.36 With the expansion of a profitable commercial market in the biomedical sciences that is increasingly wedding the predatory drive of capitalist enterprise to the appealing promises of scientific salvation and technological innovation, health has become its own economic end. That is, the health of patients has become the site and source of value.

According to this logic, the body is only valuable (that is, only useful in the generation of profit) when a person is continually consuming risk-reducing treatments. Thus, healthiness is inimical to profitability in biomedicine because a healthy patient will not regularly consume the industry’s products (Dumit 2012). The goal then becomes blurring the divide between sickness and health through the manipulation of time and affect. As the therapeutic market expands its purview into greater intricacies of risk management, healthy consumers like

Goldman and Gessen are being reframed as “patients-in- waiting” (Sunder Rajan 2006) and urged to consume new tests and drugs in order to treat risk and preempt the possibility of poor future health. From the industry perspective, these risks will ideally be chronic, leading to a state of constant liminality that requires unceasing vigilance and ongoing interventions,

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 36 For two excellent accounts of the complex entanglement and mutual production of political economic forces and biotechnological developments such as genomics, see Kaushik Sunder Rajan’s Biocapital: The Constitution of Postgenomic Life (2006) and Melinda Cooper’s Life as Surplus: Biotechnology and Capitalism in the Neoliberal Era (2008).

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pushing the boundaries of health and sickness to the extremes of bodily tolerance.37 This emergence of patients-in-waiting, or the living dead, effectively generates present profits in exchange for futured death.

Dumit uses the popular cholesterol-lowering drug, Lipitor, as an example of this generation of profit through the expansion of risks. High cholesterol is not a disease. It is a biological marker that signals that certain diseases could develop in the future as a cumulative effect of having too many lipids, or fats, in one’s blood. Therefore, the diagnostic process is quite different from diagnosis in the traditional sense of interpreting a set of symptoms and reducing them to a pathology or disease entity that requires treatment. Diagnosing high cholesterol is not about locating a present disease entity nor is it about reading a visible set of symptoms. Instead, it is about creating the conditions for treatment in the absence of pathology (2012: 57) through a kind of dislocation, as the site and time of disease takes place off of itself at the site of the indicator, or index, rather than at the site of an empirically localizable entity.

The diagnostic test measures cholesterol markers in the blood (lipids), not the diseases for which cholesterol puts one at risk (heart disease). The diagnosis of high cholesterol, which is not in itself a harmful condition, but rather a risk-increasing one, is based on a quantitative model that measures degrees of deviance from a statistical norm.

This norm is itself under constant revision by researchers with the aim of lowering acceptable cholesterol thresholds in order to increase the market for consumers of

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 37 As Joseph Dumit writes, “intolerance” is defined within the pharmaceutical industry as the “literal limit of the body’s resistance to too many drugs, that is, when it throws them up” (2012:85). As part of his larger experiment of reading Marx’s Capital as “BioMarx”’s Biomedicine within these changing health regimes, Dumit suggests that “With ‘bodily intolerance,’ we confront the same ultimate physiological barrier that Marx’s capitalists found with labor [...:] the surprisingly expandable but not unlimited elasticity of the human body [...] Marx locates it in the labor humans can be pushed to do, and BioMarx in the body’s tolerance for [treatments]” (86).

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cholesterol-lowering drugs (Dumit 2012: 46-47). Through the clinical encounter, however,

Dumit suggests that the diagnostic test converts this statistical risk into an experienceable symptom: the numerical indicator of high blood pressure, when framed by a physician as the condition of high cholesterol, turns a healthy patient without symptoms into a

“presymptomatic” patient (Lock 1998). The higher number becomes embodied as pathology that must be treated through regular medication (Lipitor). In this context, risk, or the very possibility of some future hazard or danger, takes on almost all of the characteristics of disease, and becomes a basis for diagnosis and treatment.

The BRCA gene, like the cholesterol test, is an indicator of illness potential that acts to laminate past familial sickness and possible future disease onto a presently healthy body, producing the conditions to clinically intervene. The BRCA test, BRACanalysis®, is patented and sold by the US-based pharmaceutical company, Myriad Genetics, as a predictive test that renders cancer risk probabilities to consumers who can afford its $3,340 cost.38 Blood is drawn by a medical professional and then sent to Myriad’s labs in Utah for processing. The gene test results return in the form of a single-page document, which outlines one of three outcomes: the BRCA gene mutation was found, no BRCA mutation was found (but this does not mean that there is not an as-yet-undiscovered genetic risk present), or a variation in the BRCA gene was found but it is of “uncertain significance.” This last category indicates that not enough information is known about the particular deletion detected on the BRCA

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 38 In 2009, the American Civil Liberties Union (ACLU) won a lawsuit against Myriad Genetics on behalf of four scientific organizations representing more than 150,000 geneticists, pathologists, and laboratory professionals, as well as individual researchers, breast cancer and women’s health groups, genetic counselors, and individual women. The patent on the BRCA1 and 2 genes was found to be unconstitutional and invalid, but this decision was recently overturned in an appeals court. In response, breast cancer activists have started a campaign to “Take Back Our Genes” (ACLU 2012). In 2013, the case came before the US Supreme Court. I examine the arguments and implications of this important legal suit in detail in Chapter 5.

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gene to determine whether or not it increases cancer risk. In this situation, the patient is given the bewildering medical status of being “at risk of being at risk.”

While it is suggested that patients undergo testing and diagnosis in consultation with a genetic counselor, this process is not yet standardized in the US because there has been very little regulation or oversight of diagnostic testing practices, which have historically fallen outside of the purview of the FDA. As a result of this lack of a regulation or standardization in a commercial testing system, I have heard several stories from women whom I have interviewed of family doctors delivering the test results to them informally over the phone.

One woman recounted a particularly jarring story of how she was driving to pick up her son from soccer practice when she received a call from her family doctor who told her that she carries a BRCA mutation and should start considering preventive options such as a double mastectomy “like it was nothing — no warning, no ‘you should sit down’ — just like he was telling me that my ankle was sprained or something.” This woman was so derailed by the information that she rear-ended the car in front of her. The experience of a 32-year-old mother of four deliberating about her BRCA test reflects a similar temporal dis-ease around the entanglement of genetic risk and disease reality in a blog entry from 1 May 2009 entitled

“The 200-Pound Gorilla in My Boobs.” Her anxiety is dense and palpable as she worries,

Today I’m getting tested for the breast cancer gene variants BRCA1 and 2. I’m scared out of my mind. Because I have a family history of breast cancer...I feel like I am being forced, only days after my 32nd birthday, to face my own mortality. Face the possibility that my own body could turn on me, fail me, kill me. And that scares the shit out of me (Instamomblog 2009).

Such responses illuminate a nagging problem that predictive biotechnologies pose to rational models of empirical evidence, as exchanges between clinical and affective knowledges work to confuse the seemingly distinct orders of abstract risk and concrete reality in testing processes. Women’s stories about receiving information from Myriad Genetics convey an

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active slippage between the categories of possibility and actuality — clearly, patient- consumers might receive news of elevated cancer risk in much the same way as they would receive news of an already extant cancerous condition. For these women, knowledge of their genetic risk radically alters their health status and reorients their relation to the future in tangible, material ways.

The Peculiar Privilege of Futurity

I used to think that all of my favorite words began with pre. Preface. Prepare. Prevaricate... Pre for “prior to; earlier than.” Ahead of. I’ve always loved being early: the first to board the plane; the first to get a new piece of technology. The first to plan. Preview. Premonition. Prevent.

— Amy Boesky, writing about being a previvor (2010: 2)

Notably, while the diagnosis of genetic risk often gets experienced as a direct threat to the present, those who are granted the dubious privilege of accessing knowledge of future health precarity are relatively stable in their current life situations. Women cast into these disease risk categories are generally (a) able to afford the test through insurance or personal means, and (b) interested in conjuring and altering their illness futures. Thus, the precarization of health relies on interpellating populations that are more or less financially, socially, and politically secure. That is, it targets people whose life circumstances are not conventionally or previously precarious.39 As one genetic counselor at a cancer research hospital in New York explained to me, populations who are called upon to manage uncertain risk futures must first have a privileged temporal relation to futurity (Hurley 2009). They must have the present

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 39 In an article responding to early 21st-century student protests at UC-Berkeley and campuses across California, Ananya Roy points to a narrative about the risk of being at risk, now amplified among a previously secure, white, middle-class student population increasingly vulnerable to social and economic losses. This generalized condition of precarity in the case of previously stable subjects who are now being targeted as “at-risk” by expanding health and insurance markets reflects broader political economic conditions of insecurity from which certain commercial and political entities profit under neoliberalism (Roy 2011). See also Jasbir Puar’s analysis of the relation between debt and debility in her article, “Coda: The Cost of Getting Better: Suicide, Sensation, Switchpoints” (2012).

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financial capability and social stability to invest in rendering already past an uncertain future precarity.

The particular configuration of time that is operative within economies of the

“pre”— prevention, preparedness, preemption — relies not only on a relation to potential threats, but on forms of current security and on a particular form of “responsible” subjecthood. Often, subjects oriented toward an ethics of the “pre” are not vulnerable to the historical conditions of economic exploitation, social marginalization, and political disenfranchisement; they are not generally subject to the wearing out of their bodies and their possibilities through subtle, insidious forms of everyday violence that rob them of a secure or articulable future; they are not living the miserable conditions of what Lauren

Berlant calls “slow death” (2007). Only those who are more or less exempted from many of these pervasive social and political risks to their health are, strangely, able to participate in — invest in — this process of precarization within the biomedical sphere. The majority of the previvors with whom I have been in contact are educated, employed, and insured. Most of them are healthy. Many of them are white.

In the 2008 documentary about genetic testing for BRCA gene variants, In the Family,

Adrienne White, an African American representative from the American Cancer Society who has lost 13 family members to cancer in her lifetime, discusses some of these disparities in genetic testing and prevention practices with a group of breast cancer advocates from the black community in Chicago. She speculates on why this population is underserved even though black women tend to get aggressive breast cancers at an earlier age than other populations and have the highest rates of mortality.40 At one point, White expresses

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 40 There is much to say about the demographics of previval, and the ways in which social and political histories and their remainders texture the experience of immaterial disease in quite material ways. For example, two recent US-based case-control studies found that African American women

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frustration with a healthcare system that already poses a number of “hurdles” for many people in the black community. The hurdles that White discusses are both historical and political, including a lingering distrust of public health and medical officials among African

Americans after the infamously unethical Tuskegee syphilis experiment conducted among poor black farmers for decades, among other less overt forms of institutionalized racism including increased rates of poverty, incarceration, gang violence, and housing discrimination that contribute to consistently decreased access to health outreach and services. She goes on to make a cutting remark about how encouraging people in the black community to seek out preventive genetic testing will only happen “if I can get them to live past 20, you know, if I can get them to believe that they’re worthy of living past 20” (Rudnick 2008). During this conversation, another woman interjects and suggests that it is not as important to encourage black women to seek out genetic counseling, testing, and treatment for their cancer risk, as it is to educate the medical community and encourage doctors and policy makers to stop

“blaming the victim” and to start doing more targeted research and out-reach to improve the disease outcomes of this population.

The discussion between these two women captures some of the contradictory and uneven effects of the irruption of new biotechnologies to predict and treat disease in the context of the general dismantling of the welfare state and in relation to a deeper history of social and political inequality. As many medical anthropologists have noted, the process of

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! are 78 percent less likely to access genetic counseling and BRCA testing than white women (Armstrong et al. 2005; Hall and Olopade 2005, 2006). Discrepancies such as this have been more widely attributed to historical legacies of structural violence (Wailoo and Pemberton 2006; Epstein 2007; Wailoo 2011), but are also evidenced in the biotechnology itself, which draws from genetic materials sampled from volunteer populations of mostly white and Ashkenazi Jewish descent. People of Ashkenazi Jewish descent, then, find themselves at the other end of the spectrum: this population is the most represented in the genetic test and the most likely to undergo genetic testing since many of the known deletions are Ashkenazi “founder” mutations (meaning that they can be traced back to one ancestor who had the original deletion).

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medicalization that reduces illness to an individual biological condition that can be treated through targeted medical interventions tends to obscure the social, political, economic, and environmental determinants of health (Scheper-Hughes 1992; Lock 1998; Checker 2005;

Biehl 2007; Fassin 2007; Nguyen 2005). Increasing inclusion of underrepresented groups in biotechnological interventions, then, risks reducing the broad spectrum of factors outlined by White to an individual, embodied, molecular form of risk. This form of biological reductionism can potentially deflect attention away from accounting for irregular health outcomes that tend to track along complex lines of inequality.

Among those women who do have the various social, medical, and political means to access the double-edged privilege of knowing their genetic risk for disease, only some immediately opt to enact treatment in material registers through previval, manifesting the disease in the same moment in which they preempt the disease’s very emergence. Many other women agonize for years over the question of whether or not to intervene in their futures, weighing the imperfect options as they engage in the anxious rituals of intense surveillance in the meantime, hoping each time that the screening technologies won’t detect cancer. Some women choose to take their chances; they forgo the unpleasant routine of high-risk surveillance and decline to undergo preemptive surgery, accepting that they may develop cancer and refusing to let it alter the easy currents of their everyday healthy life until the disease strikes, if the disease strikes. Still others simply refuse to find out their genetic risk at all, even when they know — through sisters, aunts, or cousins — that the BRCA gene mutation runs in their family.

The practice of previval is premised on the capacity for investing in futurity, thus marking “privilege” as the desire and the ability to stake a claim in a future that has been otherwise rendered insecure. Not insignificantly, this “productive” insecurity emerges

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through a particular set of intimate relations of family, memory, and matrilineages past and future. Indeed, immaterial disease requires the immaterial or affective labor of its patient- subjects in order for it to be rendered “real” in a material, clinical sense.41 In the following section, I stitch the formulation of affective labor developed by Michael Hardt and Antonio

Negri in Multitude (2004) together with Brian Massumi’s theory of neoliberalism’s “affective fact” (2005) in order to examine the intimate tempo of immaterial disease’s emergence in the leaky time of relation. Based on my experiences interviewing and observing previvors, for those who fully enact immaterial dis- ease on their bodies, the pre-disease does not take shape as an actuality solely within the sanitized walls of the clinic where the cold figures of risk are disclosed or where the anxious rituals of screening are performed. It is, rather, within the domestic tides of relation,42 and the more durational formations of inheritance and care that unfold beyond the confines of that institutional space, that many women work to render these disease figures knowable and familiar. The possibility and necessity to previve, I argue, emerges at the interstices of techno-rational models of risk, social processes of imagination and responsibility, and in the queasy space of “relative pain”—cross-temporal and intersubjective forms of identification which, like immaterial dis- ease, unfurl in the

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 41 In Multitude, Michael Hardt and Antonio Negri observe that immaterial labor still “constitutes a minority of global labor, and it is concentrated in some of the dominant regions of the globe” (2004:109). That privilege and dominance attend a rise in modes of immaterial labor presents a similar paradox to that posed by the dubious privilege of previving immaterial disease: while it has in many ways emerged out of privileged pockets, it nonetheless re-entrenches and exploits many preexisting conditions of inequality. For example, historically immaterial, affective labor has been associated with “women’s work,” and yet as immaterial labor increases in importance within neoliberalism, women’s subordinate position is not reversed so much as it is newly exploited (110– 11). Women’s affective labor, as I explore in greater detail in the final section of this article, is also put to work in rendering immaterial disease material, as “patients-in-waiting” are impelled to previve by, among other things, gendered roles within families toward whom they bear a sense of obligation and self-sacrifice.

42 For more on the tempo of domesticity and its relation to broader political economic conditions in the 20th and 21st centuries, see Elizabeth Freeman’s Time Binds: Queer Temporalities, Queer Histories (2010), particularly the first chapter, “Junk Inheritances, Bad Timing.”

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exchanges between bodies and times through an uneven, anachronistic practice “of being related, but not the thing itself ” (Schneider 2011: 53). Affective worlds come to be experienced as time and time again, or a kind of being out of time, as women collapse family members’ futures-now-past with their own futures-present.

“Relative Pain” and the Actualized Theatrical Fact

It is a sweltering summer day in Orlando, Florida, yet those of us gathered in the air- conditioned conference room of the Hyatt are freezing. As we go around the room and make short introductions, many of us rub our arms and legs trying to generate heat and pacify the goosebumps that have bristled on our exposed limbs. The women in this room are participating in an information-sharing session on preventive surgical options that is part of an annual two-day conference organized by Facing Our Risk for Cancer Empowered

(FORCE), a non- profit organization run by patients that advocates for those living with hereditary cancer risk. As my gaze passes across the faces in the room, I am struck by the youth and apparent health of the women gathered here. It seems strange that most of them are dealing with the specter of family death and the threat of personal disease.

A petite blond-haired woman fiddles with her beaded necklace and glances around the room. She says that her name is Amy. Her mother developed breast cancer when she was only 38 and was diagnosed with late-stage ovarian cancer two years later; her aunt died of breast cancer at the age of 42; her grandmother died of metastatic ovarian cancer before

Amy was born. Amy breathlessly lists these familial diseases and deaths in a clipped and brief fashion, as if the expected affective jolt has been dulled by the accumulation of tellings. She sounds both anxious and tired. At her oncologist’s request, Amy’s mother received a genetic test when she was diagnosed with ovarian cancer in order to find out if these aggressive cancers were linked to a hereditary predisposition. They were. Amy’s mother carries a variant

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of the BRCA mutation. Because there was a 50 per- cent chance that Amy and her sister would have inherited the gene from their mother, they both got tested last year. Amy carries the gene. Her sister does not. Amy shrugs and tucks her nervous hands beneath her legs, rocking forward slightly and lowering her gaze:

It’s hard. It’s always there whenever I do anything. Everyday. That fear that my mom will find another lump, and when it might happen to me, too. But I’m a sophomore at Florida State. I mean, I haven’t even declared my major yet. I just got my first serious boyfriend and don’t know what to tell him. It’s just — I don’t want to think about cancer right now, to tell a guy that I’m with that I’m probably gonna get it unless I get my breasts removed, but it’s so hard not to think about, to think that if I wait, it might be too late...

Amy’s voice trembles and she trails off. She forms a half-smile and shrugs, letting out a tight sigh as she looks around the room. A slightly older woman named Jenna leans forward.

Squinching up her face and looking at Amy, she says,

It sucks, I know. It’s too much sometimes, that feeling that your body’s just waiting to turn on you, like it could go off at any time. But you’ve got time to make those decisions. You’re young. I waited until I had a family and now I’m ready. I have a PBM [prophylactic bilateral mastectomy] scheduled for September. I mean, I’m terrified of the surgery and recovery will be hard, but for me, it’s still less scary than waiting until it’s too late, until I get cancer like my mom, you know? She got breast cancer when she was only 34. She passed away on her 42nd birthday. I turn 34 next month. I feel like I’m running out of time and like if I wait until I get cancer, I’ll lose my breasts, anyway, you know? So why not do it now and know that I’ll survive and my kids won’t have to see their mom get cancer? I can’t put them through that. They need me.

Threading itself through these stories of fear and frustration is an uneasy attachment to a part of themselves that has become their family’s bane, and a sense of fate, of time ticking away, of an inevitable future that can only be curtailed through a difficult choice to sacrifice body parts. There is an uneasiness that pervades their narratives, as the women gathered in the room seem alternately grateful for the opportunity they have been given to

“survive” a disease that has decimated many of their families and confounded by the very

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terms of this chance at survival. A maddening query circulates as refrain: “I either wait and hope to detect cancer early enough to survive it or I remove my breasts and my ovaries now?”43

This conversation and many like it that I have witnessed in support group meetings, conference halls, hospital waiting rooms, and suburban living rooms trouble the boundary between statistical threat and embodied reality. For many of these women, the uncertainty about where they fit in that abstract risk threshold is marked by a degree of certainty about where their loved ones fell on the spectrum. In this context, the “I” of the previvor and the nature of her risk status and biological health is not reducible to her individual body. Rather, her genes, her body, her future, are bound to and come into focus in relation to her family and their cancer history. Her life, in this sense, exceeds any strict biologized sense of what a lifetime is, as several related lives and times are caught up in the tangle of her embodied experience. This constellation of histories, affiliations, and losses punctuates and relates the lives and bodies of generations of these women, casting a long shadow across the continually unfolding present, expanding the chronicity of cancer to enfold more than one lifetime — the lives of mothers and grandmothers who have passed away from cancer and the lives of children in future generations who could be spared this eternal return.44

Medical indeterminacies such as genetic disease risk often get concretized through

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 43 Some of the difficulty surrounding this “choice” for women has to do with the symbolic meanings as well as sexual functions of their breasts and ovaries. Removing ovaries can mean forgoing the option to conceive children and embracing the difficulty of experiencing sexual desire and pleasure without any hormones, in addition to the negative health effects brought on by surgical menopause such as osteoporosis, memory loss, stroke, and vaginal atrophy. While these side effects are considerable and inevitably recontour one’s everyday life, to reduce this tricky configuration of immaterial disease and previval to a physiological or sociological concern with the abstract ideal of bodily integrity is reductive at best.

44 For more on this concept of a “lifetime,” see Angela Garcia’s formulation of chronicity and negative inheritances (2008).

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ongoing narratives of intergenerational identification, feelings of familial obligation, and durational modes of care. Over time, it becomes evident that the uncertain “if ” that indicates the potential for future disease can eventually slip into a more urgent temporal register of “when” as this possibility slowly constitutes itself as certainty over time. A number of women narrate this affective shift from the “if ” to the “when” in vivid terms: they describe their bodies as “ticking time bombs” and they fret over when the time will come that their bodies will “turn on them” like the bodies of their mothers, sisters, aunts, and grandmothers turned on them:

My grandmother was only 38 when she passed away, so I never met her, and my mom always waited until that birthday. She kept thinking, this could be my year, so you know, it’s always there. She did get it at 50, died at 54. I decided I’m not gonna wait around. The year she passed away, I learned about genetic testing... So, I went for the test, I came out positive, and I had the prophylactic mastectomy. I feel so wonderful. It was just such a relief to get it over with (in Rudnick 2008).

In theatrical terms, the cancer being treated in the previvor’s surgery is a mere imaginative fiction — the disease is not real in the empirical, clinical sense of facticity. It is cast into a future understood as possibly scripted but not actualized. Similarly, the risky gene that is relied on as the script in this process is itself a representation, a surrogate, an abstraction, a figure. But these theatrical facts are also and at the same time performative, constituting things done, in that they are profoundly lived, embodied, and bodied forth as a real disease that exceeds the leaky boundaries of statistical fiction, taking shape as the site and source of action, effecting a reality of pre-disease through the production of an affective dis- ease and leading to a material, surgical intervention. Readers may note that this goes against conventional readings of Austinian performativity that figure theatricality as its etiolated, diseased, or effete foil: in the case of immaterial disease, the “real” is manifested through

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theatricality, or the “as if ” of a potentially scripted future.45 Immaterial disease becomes itself

(gains materiality, facticity, legibility) through its own theatrical gesture — where investing in a script brings that script (cancer) into being by treating and potentially eradicating it in advance of its own enunciation. For many of the women who are previving cancer, the as- yet-unreal fiction of a potentially diseased future bleeds into the borders of a lived, healthy present, materializing the conditions to act on a future-past that comes to pass as an embodied fact.

These affective, temporal, and immaterial forms of labor that are put to the work of actualizing disease are also operative in the neoliberal logics that require conjuring “affective facts” as the basis for action rather than on unearthing evidence. Following Michel

Foucault’s assertion in The Birth of Biopolitics that neoliberal governance never relies on the binary logic of true or false (2004: 94), Brian Massumi suggests that the practices that make up the machinery of neo- liberalism are increasingly based on educated guesswork, or speculation, that is meant to act on uncertain futures (2005: 2). Within a speculative reasoning that Massumi claims to be the dominant mode of knowledge under neoliberalism, the temporality and nature of evidence has ceased to be grounded in the concrete certainty of empiricism and the linear extension of cause and effect, or past and present. The privileged object of intervention is no longer rational inter- est or actuarial probability, but affect, meaning that “the consequences that determine the decision’s correctness are directly affective rather than factual” (5).

Massumi charts the “future birth of the affective fact” in relation to the Bush regime’s geo-political policy of preemption, wherein uncertainty becomes the mobilizing !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 45 Stephen Bottoms develops a compelling critique of the asymmetrical relation between performative “efficacy” that does things and theatrical “effeminacy” that merely shows as it has been rehearsed, retheorized, and re-entrenched in the academic field of performance studies (2003).

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force for intervention because, as the reasoning goes, once the certainty of a terrorist attack or an economic crisis is made known, it is always already too late to act. One must, therefore, act before the need for action is present — one must sidestep the present in order to intervene in the future unknown (5). Paradoxically, in so doing, preemption effects this possibility as an inevitability — as that which was bound to happen — materializing the consequences of a conjured event. Such temporal relocation of action toward the site of emergence — understood here as that which is neither present nor imminent, but is rather characterized by pure ideational potential (see Cooper 2008) — is increasingly evident in geopolitical policies of military preemption and public health preparations for possible biological threats (see Schoch-Spana 2004; Braun 2007; Lakoff 2008; Masco 2008;

Samimian-Darash 2009).

Immaterial disease extends this theatrical condition of neoliberal knowledge further than the affective fact. The domains of the real and the not-real are not only tightly interwoven as they are in theatre. In the case of immaterial disease, the “not-real” of imaginative disease re/enact- ment and the multiplicity of times sounding off of the now, becomes the necessary precondition for the actualization of the “real” in the material surgical intervention on the patient’s body. Rather than being the degraded, feminized, error- ridden Other to medical empiricism and scientific rationality, theatricality — as affective exchange, as time out of joint, as relative pain, as the both/and — is the very condition for the achievement of a clinical fact and a biomedical disease reality. The emergence of theatrical facticity challenges the stubborn hierarchy that has characterized much of the

Western history of knowledge production, which tends to render theatre subordinate to science and figure feelings as inferior to facts. The dogged divides between expert knowledges and embodied, affective ways of knowing that have been framed as subjugated

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epistemological others thus dissolve (see Conquergood 2002). Importantly, many of these temporal and affective manipulations at work in materializing the theatrical fact are not unique to the fabulation of immaterial disease. As I explore in greater detail in the following chapter, these theatrical modes of facticity are also operative in financial practices of speculation and accumulation (Sunder Rajan 2006; Cooper 2008) that have become tethered to the more general economies of breast cancer treatment and prevention through collaborations between venture science and patient activists. In an “economy of appearances

[which] seems so real that it must be true” (Tsing 2005: 74), conjuring acts that play across orders of knowing and between times work to actualize realities in the present — as profit, as innovation, as intervention — through the technical tweaking of tense, affect, and artifice.

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CHAPTER FOUR

Promises, Promises: Untimely Economies of Life and Performances of Risk in Venture Science

I’m giving up hope. It’s the most optimistic statement I have ever made. – Fran Visco, President of the National Breast Cancer Coalition

On January 1 2010, the most influential breast cancer lobbyist group in the U.S., the

National Breast Cancer Coalition (NBCC), gave up hope. The nonprofit patient advocacy organization’s president sent out a message that “hope” is a blunt weapon in the battle against breast cancer. The refrain, echoed in dozens of testimonies on the NBCC’s website given by breast cancer survivors, patient advocates, celebrities, and past and present U.S. presidents, was the same: “For decades we’ve been fighting cancer with hope. For decades, the lives of our daughters, mothers, and friends have been in the hands of hope. It isn’t working ... No more. Today we give up hope” (NBCC “About the Deadline” 2011).

The campaign singles out hope as the source of a failure. Hope has failed to yield curative results. Hope has allowed valuable time to be lost, necessary momentum to wane, and countless lives to be lost. Instead of working toward a cure, the campaign says, hope has had us working toward awareness. Instead of rooting out and eliminating the causes of the disease, the campaign suggests, hope has had us throwing our pennies and dollars and passions at causes for the disease. And while we are all “awash in pink” and all of its rosy promises, the refrain goes, scientists and medical researchers have made incremental

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progress toward eradicating the disease since the NBCC’s formation in 1991. “Over the past eighteen years,” the NBCC’s website insists, “despite all of the funding and all of the walks and runs and gala dinners, annual breast cancer deaths in the U.S. have barely budged” (ibid).

Grim statistics reflect these near unchanging rates of cancer death and illustrate a 40% rise in cancer diagnoses. Bemoaning hope’s failures and deferrals, the organization argues that all of these “lost lives justifiably mock our acceptance of the fragmented, siloed, no-end-in-sight strategy currently at work” (Breast Cancer Deadline 2020 2010). “Hope,” one sassy breast cancer survivor from Texas declares in a YouTube video, “is a four-letter word.”

In place of hope, the NBCC offers a deadline.46 The organization proposes to cure breast cancer by 1 January 2020. In this 10-year timeline, the NBCC seeks to initiate a paradigm shift in the ways in which breast cancer research, treatment, and advocacy is done.

In the face of ongoing suffering and loss, the NBCC insists that screening and awareness are not enough. Instead, we must concentrate our funds and efforts on understanding “how to prevent people from getting breast cancer in the first place and how to prevent them from dying from the disease” (Blueprint for Breast Cancer Deadline 2020 2012: 1). By refocusing on the problem of breast cancer’s relentless recurrence and the absence of adequate treatment and prevention, the patient-run nonprofit reinserts death, risk, and prognosis into popular representations of breast cancer. This gesture effectively revokes the philanthropic focus that has defined much pink-infused, hope-based breast cancer activism in the past two decades. In its stead, the NBCC resurrects that other figure of salvation in cancer culture –

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 46 The NBCC is not the first breast cancer organization to set a deadline. The Susan Love Foun- dation – named after the famous scientist and breast surgeon who co-founded the NBCC in the 1990s – also set a deadline for the cure. In 2005, the stated mission of the Love Foundation was to “end breast cancer in ten years.” As 2015 approaches, the deadline is nowhere to be found among the Love Foundation’s goals. Love has, however, been a highly visible and influential advocate of the NBCC’s new deadline campaign.

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technoscience – as it attempts to revive its mortal subjects and reimagine survival with a five- page blueprint that scripts 10 years of massive progress and innovation in cancer treatment and prevention.

NBCC’s refusal of that hoary neoliberal formation – hope – is indicative of a broader shift in the affective atmosphere of crisis-riddled “post-hope” America (Malone 2011). As

Lauren Berlant has recently noted, different affective economies are emerging in relation to the general erosion of the welfare state, the privatization of previously public institutions and social supports, and the “crisis ordinariness” of everyday life lived within the “destabilizing scenes” of the market (2011). In the context of increasingly pervasive insecurity, it seems, hope’s deferrals and its discourses of sacrifice, patience, and meritocracy are giving way to more disenchanted, uncertain affective states such as anxiety, contingency, precarity, and hypervigilance (19). Within this shifting “structure of feeling” (Williams 1977), the perpetual belatedness that has defined hope and its neoliberal displacements has begun to erode public trust and degrade aspirational capacities as environmental toxicity, financial instability, and social insecurity continue to exhaust our bodies in the meantime.

Against hope, the NBCC’s deadline offers an alternate mode of optimism – one that embraces contingency, exigency, and risk, and puts these insecurities to work in the volatile terrain of the market in scientific innovation. “A deadline changes everything,” NBCC

President Fran Visco declares:

No experiment, no charity, no lab, no doubt, no promise, no critique, no iota of research can occur outside of its context. Today, the conversation changes. 2020. The end of breast cancer. This is serious. This is real (Visco 2010).

The deadline does not cover over the ugly reality of living with a debilitating disease or dying an “untimely” death. Indeed, it counts these deaths in order to imagine and enact a

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different future in the present. Untimeliness – anticipatory, experimental, simultaneous, porous, and speculative in its articulation – captures these alternate arrangements of life and action as they are mobilized in the speculative economies of science that creatively imagine, materialize, and manage futures in the present to various effects. The precarious composition of the deadline renders this untimeliness explicit: life is quite literally on the line.

In its most common usage, a “deadline” is a temporal configuration. It is a time limit that marks the latest possible moment by which one must, for example, pay a debt or submit revisions on a journal article. That is, it marks an endpoint in time. However, etymologically, the deadline is also a spatial-material configuration. In Civil War prisons, the deadline was an imaginary line that was often marked by “shifting strips of [boards nailed] upon the tops of small insecure stakes or posts” (Wirz 2010). If a prisoner were to “touch, fall upon, pass over or under or across the said ‘dead line,’” he or she would be gunned down (ibid). In this usage, the deadline marks an endpoint of life. It is that imaginary, shifting, unstable border between bios and necros. In what follows, I use the simultaneously temporal, material, and discursive formation of the NBCC’s deadline as a site from which to examine transmutations in well-worn boundaries between life and death, affect and materiality, and present and future, as they mutate and morph within contemporary biopolitical regimes of breast cancer research and advocacy in the U.S.

I begin by contextualizing the NBCC’s refusal of hope within the ideological and material surround of breast cancer politics. In the past two decades, charities and corporations have joined forces to ostensibly fill in the gaps in public health and social support left by a receding welfare state. Recently, the social good and stated intentions of many of these charity–commerce alliances have come under harsh scrutiny. I read the

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NBCC’s affective shift in relation to this critical turn, analyzing this major political advocacy organization’s methods, strategies, and rhetoric in relation to two other major actors in the breast cancer movement – the social justice watchdog group Breast Cancer Action and the massive breast cancer charity and disease brand, the Susan G. Komen Foundation. In doing this, I argue that the NBCC’s campaign is indicative of a move away from previously dominant modes of charity–corporate alliances to the co-evolving public–private partnerships in regimes of speculative enterprise that have come to characterize the biomedical and life sciences. This turn is not a refusal of the privatization of care or a reorganization of the corporate-cancer nexus; it is merely a shift in the politics of optimism that mark neoliberal economies of health, as women are forsaking the rosy hope of pink industry to trade in the risky promises of the biotech industry.

In the second section, I outline reforms to patent law and venture capital enacted during the Reagan years, which effectively tethered the production of profit to biological life in emergent tissue and information economies in the sciences (c.f. Sunder Rajan 2006;

Cooper 2008). Central to these developments are processes of speculation that proliferate risks and partake in promises, all in the name of producing market futures (profits) and future markets (consumers) through the development of new biotechnologies and treatments. The temporal structure of the breast cancer deadline traffics in the promissory logic of the biotech industry; it is operating within and is indebted to an essentially speculative economy of affects (such as hoping, fearing, loving) and their multiple material effects in commercial scientific enterprise. While this speculative turn has numerous ramifications, most central to my analysis is the way this convergence of science and activism hails healthy consumers and volunteers as experimental subjects. This is the focus of my analysis in the final segment of this essay, as I explore how the NBCC – in collaboration

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with the Love/Avon Army of Women – draws on temporally divergent discourses of risk

(crisis futures) and care (enduring presents) to encourage healthy women to participate in clinical research trials, helping scientific and medical researchers to acquire biological materials from volunteers and patients. Such practices, I suggest, recontour survival in economies of breast cancer: optimistic survivorship gives way to an imperiled prognostic subjectivity.

These shifting articulations of life and labor are deeply entangled with the unfolding of fiscal economic strategies and changing modes of governance in the late 20th and early 21st centuries in the US. This “neoliberal” turn has been marked by increased privatization, the rise of speculative capitalism, and the growth of affective and flexible modes labor. Within this political economic configuration, women are differently participating in the reterritorialization, reorganization, and accumulation of their biological capacities, immaterial labor, and political subjectivities in a fraught biopolitical field of promise and contention. As such, this unstable line between bios and necros is constantly under revision and is subject to the changing social, political, and economic configurations of life, labor, and citizenship that are unfolding in this particular historical moment.

Prognosis and speculation are synonymous. While speculation operates within the micropractices of finance, research, governance, and advocacy, prognostic logics that play between the times of life and death, health and sickness, risk and security, shape the everyday micropolitics of bodies, remapping geographies of illness, citizenship, and care. The tense structure of the deadline for the cure trades on a conditional, unlikely promise of a future free of cancer by enrolling donor time, money, and bodily materials in the precarious present, funneling these raw materials into scientific research and commercial enterprise, and then recirculating these back to consumers in an engorged health market for genetics and

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prevention. This temporal play works to effectively convert small acts of care and articulations of hope enacted by patients and “patients-in-waiting” who are living in the vague terrain between sickness and health (Timmermans and Buchbinder 2010), into capital gain within the speculative economies of cancer.

I write from the premise that, within the context of late (late) capitalism, we cannot usefully imagine these intimate, economic, and scientific spheres as discrete spaces. In fact, the deeply personal act of ensuring survival for oneself and others is not in excess of, but is inextricable from the machinations of speculation. This is not to say that a unified or clear logic of capital determines bodily experience or defines “life” itself. Rather, understandings of and investments in life gain meaning in the spaces of “friction” (Tsing 2005) between and across these fields of social, economic, and institutional emergence; and their contours are not smooth, fixed, or inevitable, but messy, interpenetrating, and unstable. The “deadline” merely offers a way into thinking about the complex ways in which certain persistent and emergent definitions of life and time are key to the temporally fraught conjuring acts of late capitalist modes of production.

Fuck hope. Keep us alive

I hate hope. It was hammered into me constantly a few years ago when I was being treated for breast cancer: Think positively! Don’t lose hope! Wear your pink ribbon with pride! A couple of years later, I was alarmed to discover that the facility where I received my follow-up care was called the Hope Center. Hope? What about a cure? At antiwar and labor rallies over the years, I have dutifully joined Jesse Jackson in chanting “Keep hope alive!” – all the while crossing my fingers and thinking, “Fuck hope. Keep us alive.” – Barbara Ehrenreich, “Pathologies of Hope” 2007

The NBCC is not the first in the world of breast cancer charity and activism to call

“hope” a four-letter word. Since 2002, Breast Cancer Action (BCA) – the only major breast

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cancer organization in the U.S. that does not accept any funding from industries that profit from or contribute to breast cancer – has taken issue with the instrumentalization of hope by corporations and cancer charities in its ongoing “Think Before You Pink” campaign. The main targets of the campaign have been the Susan G. Komen Foundation – the world’s largest and most profitable breast cancer charity – and some of the organization’s 240 corporate partners, whom BCA has labeled as “pinkwashers.” The activist group harshly condemns these corporate–charity alliances for claiming to care about breast cancer by selling pink ribbon products, while superficially addressing and even exacerbating the persistent and uneven problem of cancer-related morbidity and mortality. Many of Komen’s

“pink” companies, BCA has pointed out, donate a paltry amount of their pink ribbon profits to cancer research in comparison to their bloated marketing budgets, and worse – many of these pink commodities either contain or emit cancer-causing toxins. In full-page advertisements in the New York Times Magazine, product boycotts, and letter-writing campaigns, the organization has attacked Avon and other cosmetic giants for including toxic, estrogen-mimicking ingredients in their “body care” products that may be linked to increased breast cancer risk (Think Before You Pink 2003); they went after BMW for emitting toxic polycyclic aromatic hydrocarbons from the exhaust of their pink “Ultimate

Drive” for the cure car (2007); they told Yoplait to “put a lid on” including the cancer- correlated synthetic hormone rBGH in their pink yogurt (2008); and in their “What the

Cluck” campaign, they spanked Komen for partnering with Kentucky Fried Chicken (KFC) in a pink “Buckets for the Cure” campaign that targeted poor and under-served groups, urging them to consume unhealthy foods that – again – could be linked to heart disease, diabetes, and yes, cancer, while making little effort to increase access to health care or preventive resources for these populations (2010). All of these critiques point a damning

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finger not only at the hypocritical practices of corporations and charities, but at political officials who are engaged in outsourcing the government’s job to protect public health to civic and corporate entities, while failing to regulate or intervene on the behalf of women living with and at risk for breast cancer through meaningful policy changes.

Interestingly, in 1991, roughly a decade before the BCA launched its campaign against pinkwashing, the organization joined forces with the Komen Foundation in a set of conversations about precisely this issue: how to get the government to support policy decisions and funding practices that would benefit women’s health. Under the dual leadership of prominent breast cancer researcher and surgeon Dr. Susan Love and Susan

Hester (then-director of the Mary-Helen Mautner Project for Lesbians with Cancer), representatives from BCA, Komen, and numerous other breast cancer groups collaborated to create the NBCC as an umbrella organization that would advocate for the interests of breast cancer patients and survivors at the public policy level in Washington DC. As one activist affiliated with BCA described the meetings leading to the development of the

NBCC: “The Komen ladies, dripping in diamonds, sat on one side of the table, and across from them were some of the women from the Mary-Helen Mautner Project for Lesbians and Cancer” (interview cited in Klawiter 2008: 139). This alliance was, however, short-lived.

Cancer community members claimed that “the Komen ladies (and they were always referred to as ‘ladies’) decided to pull out of the NBCC while it was in the process of formation because they did not want to work with feminists and lesbians” (ibid). The feminist political agenda of the NBCC, and the social justice and environmentalist underpinnings of the BCA did not easily align with the Komen Foundation’s larger objective – to mainstream breast cancer by divorcing it from the complex social formations of race, gender, sex, and class that unevenly shape women’s (and men’s) experiences of the disease.

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In ensuing years, this ideological rift grew. While the NBCC worked to render the ugliness and persistence of breast cancer visible to the federal government, the Komen foundation began its efforts to popularize the disease. By 1993, the NBCC had made rapid progress in advancing its objective to make the government increase funding for breast cancer research, provide wider access to education, prevention, and treatment, and involve patient-consumers as active collaborators in health policy decisions, including the funding and design of scientific research. Gaining support from Bill and Hillary Clinton, the NBCC was able to increase federal spending on breast cancer research to US$400 million in its first year alone. Since that time, the organization has helped to make breast cancer the most funded form of cancer by the National Cancer Institute and has led the development of the

Department of Defense Breast Cancer Research Fund, which is the second largest funder of breast cancer research in the U.S. The NBCC was also able to forge new connections between consumers and scientists. Pioneering an incorporative model of citizen science, cancer activists with the organization began to serve as lay experts; they worked with doctors and scientists researching the disease and contributed to policy decisions about funding allocations, research priorities, and patient access to treatments. By 1998, the NBCC had completed its first successful collaboration with a biotech company, Genentech, by helping to develop and bring to market the breast cancer therapy Herceptin,47 which has been lauded

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 47 Herceptin is a drug that targets a genetic alteration found in 15-25% of breast cancer patients. The reason that the NBCC became involved in the research and development process is not straightforward and sheds light on another field of contention and set of negotiations among these various groups. In 1995, BCA activists in San Francisco discovered that Genentech was testing an effective breast cancer drug. In an attempt to force the company to provide “compassionate access” (administering the drugs to critically ill people prior to FDA approval), BCA joined forces with AIDS activists from ACT-UP, and used guerilla tactics including a phone and fax zap on the biotech firm and a car funeral procession at the corporate headquarters. Genentech brought in Fran Visco (NBCC) to diffuse the situation. BCA was not pleased. Visco did, however, successfully negotiate a deal for a compassionate access lottery in exchange for the biotech company allowing her to participate in designing and recruiting for the clinical trials (Bazell 1998; Baldwin and Cook-Deegan

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as one of the most revolutionary advances in breast cancer treatment. By 2001, the NBCC was voted one of 25 most influential organizations on health policy in the U.S. (Heaney

2003) and had taken its place as the “symbolic head, or sovereign of the breast cancer movement” (Klawiter 2008: 278).

In spite of all of NBCC’s accomplishments, the Komen Foundation won out in its attempts to shift popular representations and discourses surrounding breast cancer away from an anguished politics toward a depoliticized health issue infused with hope and evacuated of bodily suffering. Indeed, Komen’s incredible success as an organization is owed to its ability to decouple popular images of breast cancer from death, victimhood, and non- normative bodies toward more “palatable” images of femininity and beauty, optimistic survivorship, and normatively sexed and gendered bodies. In her recent book Pink Ribbons,

Inc., Samantha King reads this representational transition as marking a broader shift from politics to philanthropy in the battle against breast cancer. Within this transformation, according to King, the “cancer victim” gradually disappeared and was replaced by the empowered, optimistic, “survivor”; the focus on public health and social welfare issues such as increasing access to health care and mitigating the negative impacts of social and economic inequality on health were eclipsed by a commercial culture of private giving and personal responsibility. King links this dramatic turn to the erosion of state-sponsored social supports within a neoliberal regime in which “public-private initiatives and individual and corporate giving are promoted as morally and economically viable means through which to respond to societal needs in lieu of the state’s role in mitigating the effects of capitalism”

(2006, xxvii). What King describes is the rise to dominance of a particular mode of corporate governance: corporate social responsibility (CSR) – otherwise referred to as “social !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 2013).

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performance” or “corporate philanthropy” – which requires corporations to perform ethical citizenship by taking proactive measures to promote public interests.

Thanks in large part to Komen’s successful attempts to brand and sell disease, supporting health-related initiatives through donating a percentage of sales to single-issue charitable organizations has become one of the most prominent modes of corporate philanthropy. Indeed, pink ribbon-centered corporate social performance has proven to be a remarkable marketing tool that allows companies to demonstrate their commitment to women’s health to the government as well as to consumers, effectively meeting CSR quotas and increasing their customer base by enabling consumers to perform practices of

“compassionate” and “ethical” consumption. “Buying good to feel good,” an American consumer can purchase a pink bucket of fried chicken or a pink iPod and get the affective pay-off of knowing that her conspicuous act of consumption is helping to save lives. Instead of curbing unethical or environmentally unsound practices that may actually cause breast cancer or detract from the “public good,” then, many corporations that “go pink” are generating profit and obscuring practices of capitalist production that systematically exploit, exclude, and produce the vulnerable populations that they simultaneously claim to help.48

As BCA’s “Think Before You Pink” campaign has made clear, institutional performances of compassionate recognition in the shape of highly publicized donations can often obscure the structures of inequality that condition profit. CSR initiatives such as pink campaigns deflect accountability away from the joint role of private corporations and governmental deregulation in churning out social inequalities and environmental toxicity in everyday processes of capitalist production. Within a political regime of non-interventionism !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 48 Lisa Ann Richey and Stephano Ponte develop a compelling analysis of this process of branding and selling health in the global humanitarian context of AIDS initiatives such as Project RED in their excellent monograph, Brand Aid: Shopping Well to Save the World (2011).

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and privatization that assumes that the market is intrinsically rational and will distribute risk, profit, and loss according to individual worth, the mechanism of hope often becomes a supplement to neoliberalism’s violent exclusions. This affective orientation toward a better future not only helps to funnel resources to massive corporations that are among the culprits in reproducing global economic and environmental inequalities, but it defers justice to a future moment and renders present precarity an individual problem, rather than a political one. As biting critiques of breast cancer enterprise and its investment in hope have shown, those rosy futures all dressed up in pink are inextricable from the lines of class, race, education, environment, and geography that coalesce to shape the likelihood of realizing these futures, a likelihood that is tethered to forms of privilege that exceed the bare act of aspiration. These futures all demand investments of time, resources, even emotions and other bodily capacities in the present for such possibilities to be realized, possibilities that are neither certain nor secure, and which are enmeshed with the economic interests of multinational pharmaceutical companies and for-profit corporations.

In the mid to late 2000s, the NBCC president, Fran Visco, began to echo some of these critiques of pink commerce, saying: “When companies make cancer so pink and pretty and upbeat, too many people think we’re close to getting answers and that breast cancer isn’t the problem it once was” (interview in Stukin 2006). Since the urgent message that women are still dying in droves is lost in the hopeful flood of pink, this rosy optimism could, according to Visco, be deadly. Revoking the pink-infused hope of breast cancer culture that mutes the harsh tones of death and suffering, Visco insisted once again on stressing the wretchedness of cancer – the unchanging rate of breast cancer deaths and rising number of diagnoses, the faltering course of biomedical progress toward understanding, preventing, and treating the disease, the dated face of public-health interventions focused on early detection,

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the persistence of a debilitating treatment regime of “slash, burn, and poison,” and the deeply saddening reality that many women still do not survive. It is within this context that the deadline has emerged. Responding to cancer survivor and popular author Barbara

Ehrenreich’s angry call, “Fuck hope. Keep us alive,” the NBCC’s deadline appears to crucify the neoliberal “tyranny of cheerfulness” (King 2006) that has dominated popular breast cancer narratives about “survivorship” since commerce and charity were wed in the 1990s.

While the NBCC’s turn away from hope and toward saving lives in its deadline acknowledges the suffering and loss that has endured and even increased in spite of the breast cancer industry’s efforts to raise funds and awareness, the organization suggests that the answer to the pinkwashing of disease and death is scientific progress, not social justice.

As evidenced by the NBCC’s publicity ad – a gloved hand holding a petri dish over the bold print, highlighting the word “deadline” – the deadline is first and foremost a scientific weapon (Figure 8). By prioritizing scientific innovation and actively working with researchers to develop medical technologies to meet the deadline for a cure, Visco and the NBCC decouple their critique of hope from the broader contexts of neoliberal deferrals, sociopolitical exclusions, and toxic environmental exposures. This science-centered approach to treating and eradicating disease in many ways evacuates this “elegiac politics”

(Jain 2007) of its very political message and invests in another double-edged articulation of neoliberal hope: the promissory futures of the biotech industry.

While they are critical of the big business of giving life through corporate philanthropy, the NBCC’s deadline campaign is entangled with an ensemble of values, practices, and affects that could also be deemed neoliberal: the big business of saving life within the promissory futures of biotech and pharmaceutical research and development.

These industries imagine and mine the future itself, reinventing it as a tangible, material

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frontier of innovation, possibility, and profit through the proliferation of risk-management tools and the promise of emergent biotechnologies that all aim to overcome the limits of social insecurity, financial volatility, and environmental degradation. At the same time, this bioeconomy enables, produces, and obscures the very imperilment of life that it purports to protect, profiting off of the financialization of biological life and the displacement of the industry’s harmful by-products elsewhere in space and time. Indeed, a rising investment in life science’s speculative futures has “gone hand in hand with a redistribution of funds away from public health and nonprofit medical services toward commercially-oriented research, health services, and for-profit applications” (Cooper 2008: 27), and has led to an increased reliance on uncertain, high- risk modes of private financial investment in expanding health markets. This shift, then, is more of a lateral move within a neoliberal politics of optimism than a full reversal, refusal, or reorientation. Pink commerce traffics in hope. The scientific industry for cancer research and development, with which the NBCC is allied, trades in promises.

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Figure 8. Newspaper advertisement for the Breast Cancer Deadline 2020. © National Breast Cancer Coalition

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Speculative tenses of experimental life

[T]he operative emotions of neoliberalism are neither interest nor rational expectations, but rather the essentially speculative but nonetheless productive moments of collective belief, faith, and apprehension. What neoliberalism seeks to impose is not so much the generalized commodification of daily life – the reduction of the extraeconomic to the demands of exchange value – as its financialization. Its imperative is not so much the measurement of biological time as its incorporation into the nonmeasurable, achronological temporality of financial capital accumulation. – Melinda Cooper, Life as Surplus, 2008

In speculative enterprises, profit must be imagined before it can be extracted; the possibility of economic performance must be conjured like a spirit to draw an audience of potential investors. – Anna Tsing, Friction, 2006

The expansion of speculative practices within scientific research and biotechnological development is an important, though less examined, strand in the genealogy of breast cancer politics. Interestingly, this parallel formation provides a different mapping of the well-drawn ideological fields of contention and affiliation that have emerged around pink politics. While the breast cancer movement has been visibly dividing around the issue of corporate philanthropy in recent decades, women from across the pink spectrum have been differently engaging in the co-production of novel objects and imaginaries in the realm of technoscience through their work as volunteers, patients, policy advocates, consumers, and activists. Since the 1980s, these social actors, along with policymakers, researchers, venture capitalists, and others have (sometimes unwittingly) participated in a dual movement of capital and life toward a regime of speculation. This formation of speculation – loosely composed of a range of temporally and materially unruly processes including financialization, dispossession, and innovation – is marked by a double relocation of capitalist modes of accumulation to the domain of life itself (that is, to biological materials such as genes, cells, microbes) and to the folded time-space of the future-anterior (that

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which will have been). Policy related to biomedicine and technoscience has, in many ways, served as the “connective tissue,” to use Margaret Werry’s phrase (2011), tethering these large-scale forces of speculative capitalism to everyday practices of laboring and living. Two policy developments, premised on a budding logic that equated financial growth with social gain, can be credited with precipitating this speculative shift by binding economic development, in all of its temporal fitfulness, to biological life at institutional and organismic levels: the landmark Supreme Court decision in Diamond v. Chakrabarty and the passage of the

Bayh-Dole Act in Congress. These legislative and regulatory measures, along with many decisions and practices that followed from them, effectively refigured the relations between public research and private industry, recalibrated the tenses and sites of production, and redrew the boundaries between inert matter and living things.

Patent protections have been key tools that foster innovation in the domains of science and technology since Congress passed the Patent Act of 1790. However, it was only in 1980, when the major growth industries in the U.S. economy such as petrochemicals and pharmaceuticals were beginning to turn to the life sciences as a solution for managing the toxins, chemicals, and hazardous waste of industrial production, that it became possible to secure patents on living matter. In the 1980 legal case of Diamond v. Chakrabarty, the Supreme

Court concluded that the oil-eating bacterium that the General Electric scientist, Ananda

Chakrabarty, had developed to potentially clean up oil spills met the criterion for patentability. According to Chief Justice Berger, the decisive distinction in the case was not whether the entity was living or dead, but whether it was a product of nature or a product of human invention (Krimsky 1991: 48). Chakrabarty’s bacterium had not previously existed in nature; it was the product of laboratory manipulations. It thus fell within the domain of patentability put forth in the Patent Act: “anything under the sun that is made by man.”

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What ensued was a veritable gold rush in the biomedical industry through the patenting of cell lines, genes, and animals, which opened up new spaces for expansion, profit, and discovery in the growing biotechnology industry.

Of course, the patenting of biological life – particularly human materials – did not go unchallenged. In 1990, in Moore v. Regents of the University of California, cancer patient John

Moore sued his doctors at the University of California, Los Angeles over who owned the cells excised from his spleen when he was being treated for leukemia. Courts decided in favor of the researchers, claiming that Moore’s ownership of his own tissues might hamper socially valuable research. As science studies scholar Sheila Jasanoff explains in her essay

“Taking Life,” this legal decision and others like it that have allowed for the patenting of bodily matter such as genes and cells “illustrate the inclination of property law to put otherwise unproductive inanimate matter into circulation, creating economic value” (2012:

168). In many ways, the undecidability of biological materials set forth in the two cases – as both living and dead, neither human nor non-human – is what has allowed them to circulate within a promising bioeconomy that reconfigures bodily matter as a highly valuable social and financial resource.

The Bayh-Dole Act, passed in the same year as Diamond v. Chakrabarty, was markedly influenced by the legal case and shared a similar logic to the one of financialization that undergirded the Moore v. Regents of the University of California decision. This federal policy gave publicly funded institutions and researchers the right – nay, the imperative – to patent research findings that had previously been in the public domain. Contrary to previous legal definitions that saw private industry and public service as separate spheres, this reform figured for-profit enterprise as providing a major public service: commercial scientific research would produce socially useful products – new cancer drugs, new biological and

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information technologies, new pesticide-resistant crops – and bolster the flagging economy in the process (Newfield 2003: 176). This change in intellectual property rights reimagined the academic scientist as an entrepreneur who would be the “lifegiver of profits and products” (167). By definition, an entrepreneur takes on risks – financial, logistical, and even personal — in the present in exchange for projected future returns. “Nothing ventured, nothing gained,” as the popular idiom goes. With private ownership over her publicly funded findings, the scientist-entrepreneur could take greater risks in her research and more easily translate these risks into financial and social gains by partnering with industry to bring the research to market at an accelerated rate. Unlike a philanthropic model that converts privately accrued wealth into social resources, this speculative enterprise model works to convert public risk (tax-funded research) and private risk (of the scientist-entrepreneur and venture capitalist) into private wealth, which will (hopefully) translate into a social resource when the technologies and treatments developed from this venture are recirculated to consumers (the public) in a competitive market in some future moment.49 What is being traded, then, is not a material product or a tangible reality, but an assemblage of promises: the promise of future profits that could be gleaned from future discoveries, and the promise of future life that could be secured by those able to access these innovations.

Of course, a promise of future profits and discoveries is not a guarantee that they will actually materialize. A promise is always only realized as felicitous or infelicitous, to use

J.L. Austin’s words, at a time at some distance from the moment of promising. That is, since the realization of the promise is deferred into the future, nothing about a promise is certain or decidable except that it is a performative claim – a “speech act.” So, the saying of a !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 49 For a more thorough history and analysis of the university–industry alliance, see Krimsky (2003) and Newfield (2003). For more on the complex entanglement and mutual production of political economic forces and biotechnological developments, see Sunder Rajan (2006) and Cooper (2008).

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promise is the doing of a promise, even though the promise is ultimately done – as in enacted through its realization as the promise delivered – in a future moment that is neither certain nor calculable. This slipperiness of the performative promise undergirds all of financial speculation: to speculate, according to David Harvey (2010), is to throw capital at activities where the underlying returns are potentially negative, yet which can nonetheless be disguised as positive, and deferred to a future moment in which they may – and likely will – register as loss or not register at all. It is because of its doubled temporality and fundamental undecidability that the performative promise is productive in volatile bioeconomies. As

Melinda Cooper (2008) and others have noted, investing in insecurity is central to the expansion of the market in biotech.

Anthropologist Mike Fortun illustrates this in his ethnographic study of the U.S.- based biotech start-up, deCODE Genetics – a company that has been founded on the prospective value of using the DNA and medical records of the entire Icelandic population for commercial genomics research. Since Diamond v. Chakrabarty, human resources – literally, biological tissues, saliva, and blood – are one of the keys sites around which the promises of cancer research and development constellate. Many scientific ventures draw on human materials in national tissue banks and public databases in the hopes of developing new, patentable biotechnologies that will allow them to predict and preempt disease futures, generating considerable profit in the process. Fortun shows how press releases and other future-conjuring techniques employed by deCODE Genetics work to generate present profit through the immaterial promise of future returns. These “promissory statements” perform crucial affective work in enlisting financial investments and state-level support in the absence of material evidence of the feasibility of realizing such hopes (such as any evidence that researchers from deCODE have identified causal links between certain genes and diseases,

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or even have access to the raw genetic materials to develop this evidence). Fortun suggests that a kind of faulty doubling inheres in the forward-looking statement of the biotech’s promise, the uncertainty of which is quite generative in producing the conditions for profit:

What the whole genome analysis of an individual, or of a complex condition such as schizophrenia, or of the genomic characteristics of a population, will lead to – this can only be promised. “Promised” here, again speaking very roughly, entails a mixture of a high degree of speculation, an avowed commitment stemming from multiple insecure extrapolations, and bets or gambles placed with a combination of care and risk (2008: 10).

Highlighting the speculative gamble of the future discovery that “can only be promised,” and this promise’s enmeshment with convergent temporal modes of care and risk, Fortun focuses on the breath of difference and space of disappointment that emerges in the repetition of “promises, promises” (103) – a phrase popularized by the 1960s Broadway musical about an insurance salesman, which points to speculative capitalism’s detour through economies of and as performance. The trip of the comma in this phrase captures the theatrical slip between the binding contract and unbinding misfire of the performative utterance and its operational place in a volatile financial market in biological materials. In speculative economies (such as those at play in much cancer research and development for a cure) that require conjuring value and acquiring interest in scientific discoveries that are not yet (and may never be) present, the “lie” of the misfire or the infelicitous performative (a performative rendered, in Austin’s sense, theatrical or “etioliated”) is not unproductive, despite Austin’s dismissive regard for such performatives as “failed.” In fact, in an on- demand market that is increasingly characterized by rapid “mood swings” (one only has to look as far as the recent sharp rises and falls of the Dow Jones Industrial Average), the affects that are instrumentalized in the act of promising (even a so-called “failed” act of promising) can and do have enormous efficacy and expediency in the context of post-

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Fordist “just-in-time” production (Marazzi 2011), where goods and services precede and communicatively produce demand. These affects are not the outcome, but are rather the creative impetus that opens up the possibility of the future anterior – of the innovation or profit that will have been – and its realization in the porous present.

Using a similar device as biotech’s hiccupping, theatrical “promises, promises,” the deadline operates within a promissory structure that conjures the future to motivate investments in the present. Equating the deadline for the cure with the eradication of polio and the first man on the moon, the NBCC places the breast cancer deadline as an already accomplished mile- stone along the historical timeline of massive scientific achievements, which were among “the most difficult challenges known to humanity.” Folding previous events of progress into the future event of a cure in the fraught tenses of the deadline, the

NBCC’s activist dis- course imagines and invests dearly in an unlikely outcome or impossible event that is always yet to come, and possibly never to come. As a promotional video for the campaign insists: “Our love for our daughters demands that we seek out and engage the most difficult battle available to us [...] This will be daunting, grueling, intimidating. It will be difficult on a scale no one can possibly imagine” (Breast Cancer Deadline 2020 2010). By embracing risk as a promissory site of scientific innovation, the deadline infuses hope with failure, with fear, with death, while simultaneously performing the possibility and necessity of imagining a radical alternative through a willingness to overcome obstacles, transcend limits, and survive.

In reimagining the future of cancer advocacy and innovation against hope through dis- courses of risk, creativity, and difficulty, the NBCC reframes the philanthropic model of the cure as a speculative enterprise for the cure. Unlike philanthropy, speculative enterprise requires taking on massive risks and using imaginative strategies in the present to conceive of

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and achieve a desired end. In this framework, the patient – like the scientist and the capitalist

– is hailed as the entrepreneur. Her investment in research for the cure is threefold, as she takes on financial, affective, and bodily risks in the name of the cause.50 She contributes financially through her tax dollars, donations to charity, and through purchasing insurance, biotechnologies, and health services. She also makes an affective commitment, at different moments placing her belief, fear, hope, suffering, love, and despair on the line in the hope of creating a space of the otherwise, free of a dread disease. Finally, women are increasingly asked to invest their bodies and biological materials in pursuit of this promise. This mode of bodily investment captures a new form of democratic participation in knowledge production that is emerging in the innovative tenses of the deadline: breast cancer advocacy organizations, in collaboration with scientists, are calling on healthy patients and volunteers to act as experimental subjects.

In the following section, I explore how the deadline’s untimely pursuit of a cure marshals structures of feeling and tenses of living in the recruitment of sick and healthy women to literally give of themselves – from enlisting time, health, and energies in clinical drug trials to providing blood, saliva, and bodily tissues for research. In this more expansive model of civic responsibility employed by the NBCC in its collaboration with the Susan

Love Foundation and Avon, the bodily materials of patient advocates are figured as central resources in processes of scientific knowledge production. These im/material bodily investments harbor the potential to produce an alternative to disease, while simultaneously producing “biovalue” (Waldby and Mitchell 2006) within a speculative market in scientific !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 50 In his introduction to the edited volume, Lively Capital: Biotechnologies, Ethics, and Governance in Global Markets (2012), Kaushik Sunder Rajan goes into greater depth about the double-edged nature of investment, as it points to both monetary and emotional regimes of interest in the life sciences, but he does not account for the bodily, material mode of patient investment in emergent bioeconomies.

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innovation. Human resources, in this design, are figured differently than the labor of the largely unpaid female volunteers who have historically been the main source of support for the cause. While such voluntary subjects are still central to the breast cancer movement, women’s bodies themselves are becoming the raw materials of production in an expanding market in cancer prevention and survival. This mode of productivity is an instance of a larger political economic shift toward flexible and immaterial forms of labor in recent years, wherein the relation between consumption and production is uneasily reversed and our bodies – including our emotions, thoughts, cognitions, feelings, intellect, and intimate relations – are consensually put to work in the “social factory” (Gill and Pratt 2008).

Living in prognosis: between the deadline and the lifeline

Spanning the top of every page of NBCC’s website is a clock ticking away the years, days, hours, minutes, and seconds until the 1 January 2020 deadline. The clock lends an excited nervousness to the experience of the website as it steadily marks the passage of time toward a not-yet-realized goal. In the left-hand digit of the second hand is a space for people who support the mission to “get on the clock” by donating money to the cause (Figure 9).

Time, in this equation, is money. The more money a supporter donates, the more time her face, or the face of a loved one with cancer, will remain on the clock. For US$20, this photo

– as an index of her compassion, courage, and inclusion in a daunting challenge and a debilitating disease – will hold court in the space of the second digit for 10 seconds; for

US$200, her index will remain for 10 minutes. Through her donation, she not only buys time on the clock counting down the end to breast cancer. She buys time against the onset of future disease. In this formulation, time gives life. “[T]he deadline is a lifeline,” the website pro- claims, “for all of us who care about breast cancer, about those who have it and those at risk, our mothers, our sisters, our daughters, our sons, our friends, the next generation.” To

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invest in the deadline is to take hold of a lifeline, gaining a purchase on survival, enacted in the name of those who have not survived, and enabled by an investment in the incalculable potential of research to save the lives of the next generation. By drawing explicit connections between the cancer deadline that it portends and the lifeline that it extends to the loved ones of volunteers, consumers, and patients whose futures could be secured against cancer’s eternal returns, the NBCC plays on intergenerational and inter-subjective experiences of chronicity. Cancer is chronic, circular. The deadline is linear, non-recursive. The deadline promises an end to the miserable replication of cancer within and across the bodies of generations of women: grandparents, parents, friends, children. The lifeline, however, veers off in multiple directions in the divergent timelines of cancer. Indeed, many of the stakeholders in the deadline for the cure are on different clocks.

Figure 9. The National Breast Cancer Coalition website where one can “get on the clock” by donating to the cause or “send a shout-out” to family and friends. (Copyright: National Breast Cancer Coalition, www.BreastCancerDeadline2020.org).

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Recently deceased pioneer in cancer research, Judah Folkman, explicates these conflicting temporalities in a 2008 lecture he delivered at Harvard (quoted in Fischer 2012).

Once you have a fatal disease, he notes, your clock speeds up; the end of a cancer patient’s lifeline may be approaching much more rapidly than a lifesaving drug will be developed.

With a cancer diagnosis, one’s timeline becomes much shorter than the 2020 deadline for the cure; a patient may simply hope to make it through the next year, just long enough to see a child graduate from college. For healthy women who are trying to buy time against future disease, the clock could be moving two ways – skipping forward into projected risk futures and reeling backwards into the modulation of cancer risk in the present through preventive measures and research investments (Nye 2012). Meanwhile, for cancer researchers, the clock moves forward in fits and starts. Research and development is a sluggish process, marked by long spans of testing, failing, groping, and testing again, which are punctuated occasionally by quick blasts of discovery. Once lab scientists locate a potential treatment, it takes years and often decades of clinical trials before that treatment gets translated into a biomedical technology and transferred into the clinic. The HER-2 oncogene, for example, was discovered in 1979. Nineteen years later – in 1998 – Herceptin, the drug that targets this gene, became available as an FDA-approved breast cancer treatment. The slip from death to life in the phrase, “the deadline is a lifeline” captures these uneasy tenses of life, death, and discovery in the sciences, as multiple time-lines intersect and diverge in the speculative regimes of cancer research and development.

The NBCC attempts to bring these rhythms of discovery and death into sync – speeding up discovery and slowing down death. One of the most effective ways to do this, according to the organization’s “Blueprint for the Breast Cancer Deadline 2020,” is to partner with researchers in the process of designing, implementing, and recruiting for clinical

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trials. The clinical trial is the most important, expensive, and enduring aspect of the decades- long project of translating cancer research into an approved treatment or preventive technology. Trials are used to establish links between a disease and its etiology, determine the safety and efficacy of a drug, and develop proper dosage and use protocols for a treatment. They are the gold standard in establishing scientific certainty; they transform speculations into facts and research into applications. Without completing a clinical trial, a drug or treatment cannot get FDA approval for public consumption.

Clinical trials have historically served as a central site in which “the structures of hope and future orientation are produced, represented, and deployed through the wider culture of cancer and its treatments” (Jain 2010: 91). They are a key source of hopeful thinking for patients with late-stage and metastatic cancer who have exhausted all other treatment options. As anthropologist Sarah Lochlann Jain observes, for gravely ill cancer patients in the U.S., “‘I need a trial’ sometimes substitutes for ‘I need a cure’” (94). This is evidenced in the persistence of a “sisterhood of guinea pigs” – women fighting to gain access to the latest and most aggressive treatments of their time – throughout the history of breast cancer treatment (Olson 2005: 84 cited in Jain 2010). Within this cancer trial infrastructure, which has historically trafficked in recruiting and testing the bodies of chronically and terminally ill patients seeking out experimental treatments as a last resort, a

“temporal hierarchy” has emerged: “The mortality of some props up, or allows, the immortality of others” (Jain 2010: 107). Cancer trials are not about saving one life at a time; they are about lumping these ailing lives together in research and experiments in the meantime in order to find patterns, methods, and paths toward securing collective life in a future moment. Thus, the logic goes: some lives will be put on the line in experiments to test the proper dosage and efficacy of unproven, sometimes poisonous and often painful cancer

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treatments in order to make it possible for a greater magnitude of lives to be prolonged in the future. In the case of Herceptin, for example, only one of the 15 patients enrolled in

Phase I of the clinical trial survived the process. Many more died during the next two phases of research and development before the drug was finally approved as an effective cancer treatment for the 15–20% of women who have a type of breast cancer (HER-2 positive) that is responsive to the drug (Bazell 1998).

While clinical trials for cancer treatments have done crucial work in sustaining the promissory imaginaries of science for desperately ill patients and for future generations by throwing them a lifeline, researchers and advocacy organizations are currently working to expand these forward-looking regimes to encompass the bodies of healthy women in research targeted toward preventing and curing the disease. Veteran researcher, renowned breast surgeon, and recent cancer survivor, Susan Love, insists that the only way to “learn how to stop [breast cancer] before it starts” is to study healthy women who have never had breast cancer since “the majority of women who get breast cancer have none of the known clinical risk factors” (Health of Women Study 2012). Yet, accessing these populations is remarkably challenging. “Over and over,” says Love, “I’ve heard scientists lament how difficult it is for them to find the volunteers they need for research studies. I’ve long believed that helping scientists overcome this obstacle would accelerate our understanding of what causes breast cancer and how to end it” (ibid). Recruiting trial participants is the most time- consuming and expensive facet of cancer research and drug development, largely because volunteers are increasingly hard to find (Petryna 2005: 187). This is due in part to the fact that the pharmaceutical industry has been extremely effective at developing and distributing treatments. So effective, in fact, that the U.S. population is now taking too many drugs. This

“treatment saturation” means that many people are unusable as research subjects because

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their bodies produce countless drug–drug interactions, making it nearly impossible to prove the efficacy of one treatment. The paucity of research subjects is also due to the sheer number of participants needed for research in order to satisfy more stringent regulatory demands. As one officer from a pharmaceutical company explains:51

If a few years ago, you needed five hundred people to make a better aspirin, today you need five thousand [...] Three adverse events in a population of three thousand are enough for the Food and Drug Administration to tell you that you need more research. The bigger the population you have tested up front, the better your chances are of speeding up the drug’s regulatory approval (Petryna 2009: 20).

In order to meet this need for experimental subjects, the NBCC, in partnership with

Susan Love and the Avon Foundation, is “leveraging the power of the internet to coordinate global clinical trials” (Breast Cancer Deadline 2020) and is attempting to “recruit one million healthy women [...] to partner with breast cancer researchers and directly participate in the research that will eradicate breast cancer once and for all” (Army of Women 2012).

The Love/Avon Army of Women website – the first of its type and scale to recruit research subjects online using crowdsourcing technologies and to actively enroll healthy populations for cancer research – interpellates experimental subjects with a strange mingling of militant Uncle Sam sloganeering and women’s empowerment discourses. Like the

NBCC’s use of personal testimonials that insist that the deadline is a lifeline for future generations, the Love/Avon Army uses the faces and words of its volunteers to highlight the

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 51 This demand for research subjects has led to the off-shoring of many clinical trials to low-income, politically unstable geographic regions around the globe in which vulnerable populations are readily exploited. Research with these populations is ideal from an industry perspective because there is often very little ethical regulation at the federal or institutional level; the cost of treatment is much lower; enrollment is higher because many people have limited access to regular medical treatment or regular income, rendering many willing to shoulder uncertain medical risks in order to access medical treatment or to make money; and due to social and linguistic barriers, the process of informed consent is much more flexible (Petryna 2005, 2009; Sunder Rajan 2007).

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reward of personal sacrifice and to foreground a gendered ethic of care. The strong, determined faces of army volunteers and researchers stare intently from the website’s screen, joined by text that urges: “We need YOU to partner with scientists working on preventing breast cancer. Women of every age, ethnicity, and breast cancer risk are needed now!” (Army of Women 2012). Nestled alongside the calls to enlist are quotes from volunteers and researchers that emphasize the radical possibilities of this “revolutionary” research and how fulfilling it is to contribute to ending breast cancer for future generations. “Writing a check isn’t as gratifying as being a part of cancer research,” says a middle-aged woman, stoic and half-smiling. A small box labeled “Volunteer Spotlight” contains “Mayra,” dark, young, lovely, filled with conviction next to a quote that reads, “I’ll do whatever I can to give my family a future without breast cancer.”

Before registering as a volunteer, one can visit the Frequently Asked Questions page in order to understand what kinds of experimental labor are required of healthy participants.

The website informs the potential volunteer that, at present, bench scientists only have access to animals and tissue samples collected from women with breast cancer. By donating her healthy body, tissues, and DNA to research, the Army volunteer will enable scientists to figure out how and why and if women like her will get breast cancer, and hopefully, eventually, how they can prevent and treat the disease. Current studies that are recruiting healthy women through the Army website include research into the various effects of birth control, pregnancy, weight, stress, diet, and mood on breast cancer risk; how shift work and disrupted wake/sleep cycles might be connected to cancer risk; how healthy cells from a benign breast tissue biopsy might be pre-cancerous; how breast milk samples can help to locate epigenetic cancer risks; how intestinal bacteria might play a role in mitigating or increasing or determining breast cancer risk; how bio-markers in one’s breath could help to

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detect cancer; and how certain genetic mutations specific to African Americans might increase their breast cancer risk (this study has the baffling name of “Jewels in Our Genes”).

As experimental subjects, many of these healthy women transition into a precarious mode of patienthood. In their attempts to ensure the future health of themselves and their loved ones through their participation in these studies, they embrace a spate of bodily risks in the meantime. At times outside of the circuit of pastoral care, they perform the work of guinea pig or raw material, rather than patient, with the pay-off of potentially generating

“surplus health” (Dumit 2012) to be consumed by women in another time off of the present. For example, a breast tissue biopsy, which is required for the healthy breast tissue study listed above, is a remarkably painful and invasive procedure in which breast tissue is removed from a woman’s breast with a large needle or a scalpel. On an Internet discussion board, one woman describes it as “getting a hole punched in your breast” (BreastCancer.Org

2012). The procedure has a range of common side effects such as bleeding, bruising, infection, weeks of pain, and scarring. Many breast cancer patients describe their lumpectomy (surgical excision of a tumor) as a far less intrusive, painful, and debilitating operation than their tissue biopsy (ibid). Other Army of Women studies, while less aggressive, nonetheless render healthy human subjects vulnerable. Indeed, every study listed above begins from the premise that, though healthy, research subjects are already susceptible to cancer: they are at risk of being at risk. Their healthy tissues and fluids may harbor some as-yet-unknown potential for disease; their daily patterns of working, living, eating, and sleeping may be increasing their risk for cancer. For example, the shift-work study suggests that researchers suspect a connection between irregular, flexible work hours and cancer risk, as uneven and interrupted sleep patterns may increase abnormal cell growth. By participating in these future-conjuring regimes of cancer risk and care, these women are coming to live

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with cancer – they are manifesting and embodying breast cancer as it gets inscribed on their bodies and threaded through their daily lives in very tangible, material ways.

Within this context, the intimate work of cancer advocates and experimental subjects disrupts the already uneasy borders between liveness, sickness, and death as these states of being get tangled in the awkward, yet still optimistic, fray of the experiential present, dense with risk. Experimental research taps into and reconfigures the temporal dimensions of disease, collapsing time as it extends the promise of an alternate time without breast cancer all the while enacting the threat of death that attends the risks of breast cancer in the meantime. Such a speculative set of practices hail a different kind of subject – one poised in uneasy relation to the fleeting ideal of health as she is suspended in a liminal state, not-yet- sick, but no-longer-well (Lock 1998). Instead of inhabiting either side of the unstable divide between living (bios) or dying (necros), the woman lives in the limen. That is, in order to guard against disease and death, she must live with disease and death. This is a subject who is, to borrow Sarah Lochlann Jain’s phrase, “living in prognosis” (2007).

Anthropologist and breast cancer survivor Sarah Lochlann Jain draws on philosopher Maurice Blanchot’s story, “The Instant of My Death,” to explain what it means to “live in prognosis.” After the story’s protagonist narrowly survives being shot by a firing squad, the specter of his death lingers. Jain uses a line in the story – “I am alive. No, you are dead” (Blanchot 2000, 9) – to capture the “simultaneous sense of life and death” (Jain 2007,

77) that attends the experience of living with cancer. Living in prognosis – as a life shot through with death – characterizes the uneasy tempo of a fitful present lived in relation to an insecure future and a past punctuated by loss. Risk renders the present thick with affective stances of possible futures that we modulate, manipulate, and modify daily. As Jain makes clear, “all of us in American risk culture live to some degree in prognosis” (2007, 79). For

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sick and healthy experimental subjects alike, the cancer deadline is shot through with this urgency and risk, particularly the risk of being late – late in the dual sense of not being in time and in being already dead – not only when the 10-year timeline reaches its end, but in the dicey tenses and messy dynamics of the late capitalist present.52 A prognostic subject is suspended between life and death – still living, but already marked with the promissory note required for risk investments in economies of life: standing in line with the already dead.

The deadline, like prognosis, is marked by the instability of a line between life and death, as the limen is played across women’s bodies and biological materials. The deadline holds forth the uncertain threat of tripping up, of falling back into death in the passing, or the already dead past, if one is not vigilant, active, innovative in the maintenance of the lifeline. Unlike the optimistic survivor that has dominated representations of breast cancer within charity and philanthropy frameworks, the speculative enterprise of scientific innovation hails a prognostic subject, risk-riddled, liminal, teetering on a shifting border between life and death, tirelessly, eagerly laboring to live though, paradoxically and in the present, alive and free of cancer. This playing of the dead across the living body is the stock in trade of theatre, as the dead of the past (or the future) are played across the living body of the actor on stage (or in this case, the woman in the clinical study). “The instability of the divide between life and death, or liveness and deadness,” writes Rebecca Schneider, is

“something of a theatrical thing.” Indeed, “the lack of resolute demarcation of the live and the dead is the very stuff of the art form” (2012: 150). In her 2012 article, “It Seems As If…

I Am Dead,” Schneider’s title cites the live 2011 performance of Ibsen’s 1896 play about the

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 52 I am indebted to Rebecca Schneider’s compelling analysis of “lateness” in the context of late late capitalism, which was published in her article, “It Seems As If ... I Am Dead: Zombie Capitalism and Theatrical Labor” in the special issue of TDR: The Drama Review on “Precarity” (2012).

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living death of a failed financial speculator, John Gabriel Borkman, as it is played live on the body of actor Alan Rickman, who says, “It seems as if… I am dead.”

Seeming and being are deeply entangled in cancer’s shifting treatment economies in which speculators and survivors co-articulate the stakes of life in the “as if” space of living with risk. As speculations on survival and risk skip and swerve into one another in the woozy, overlapping processes of production, consumption, and subjectivation that permeate the deadline, women are groping to find creative ways to locate and manage the contingencies of future illness. Increasingly, in the context of cancer, they are directing their current bodily capacities toward repairing past damages and insuring against future losses.

While many of these rehearsals of care are converted into financial gains in the porous, untimely, and fraught tenses of speculative accumulation, and while the immediate pay-off of these exchanges of labor and lively matter between patients, volunteers, researchers, and investors is unequal, that ugly, lovely thing – hope – persists. For while women’s voluntary labor as advocates and experimental subjects opens up new spaces of profitability as their bodies themselves are incorporated into the machinations of capital, the very nature, depth, and ambivalence of these women’s incorporation into the tenses and technologies of speculative enterprise opens up spaces of possibility as well. Nothing is stable, and nothing is determined in the fits and folds of speculation, and these women are engaged daily in gnarly negotiations around their liveliness – in all of its deadly matterings.

Indeed, on this very day as I write – 15 April 2013 – the Supreme Court is hearing the oral arguments in a case that may disrupt the course of legal, political, and social decisions that have tethered capital to “life itself” (Rose 2006). In the legal suit of Association of Molecular Pathology v. Myriad Genetics, Inc., the Supreme Court will determine the validity and constitutionality of the patents that the biotech company, Myriad Genetics, holds on the

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breast and ovarian cancer-predisposing genes, BRCA1 and BRCA2.53 The suit has been brought against the corporation by patients, researchers, and the American Civil Liberties

Union who jointly claim that the patent on the genes is hampering research and denying people access to important health information related to their genetic materials. Women from BCA are gathered on the steps of the courthouse carrying signs insisting “Human

Genes Belong to Human Beings, Not Corporations.” As I listen to the oral arguments, it seems that the justices are skeptical that human genes that have been isolated from a body are any less a product of nature than they are when they are in a body. As Justice Stephen

Breyer observes during the hearing: “Patent law is filled with uneasy compromises”

(Association of Molecular Pathology v. Myriad Genetics, Inc. 2013).

It is to these uneasy compromises that I turn in the following chapter.

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 53 For more on the BRCA1 and BRCA2 genes, particularly as they relate to risk subjectivities and the changing temporality of disease, see my article “Cancer Previval and the Theatrical Fact” in TDR (2012).

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CHAPTER FIVE

Biological Properties: Gene Patenting and the Mimetic Laws of Nature

Figure 10. Women from patient activist organization, Breast Cancer Action (BCA) and genetic cancer risk advocacy group, Facing Our Risk for Cancer Empowered (FORCE) held signs in front of the US Supreme Court on April 15, 2013, challenging the right of a biotech company to patent the breast and ovarian cancer genes, BRCA1 and BRCA2. © Breast Cancer Action, Photo taken by Lisa Stone.

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On April 15, 2013, women gathered on the steps of the US Supreme Court carrying signs that read, “Human Genes Belong to Human Beings, Not Corporations,” and “I Take

Back My Genes.” Inside, the Court was hearing oral arguments in the case of Association of

Molecular Pathology v. Myriad Genetics, Inc. – a case that has been called the Brown v. Board of

Education of genetic science (Shelton 2010). At stake was the patentability of human genetic materials, specifically the BRCA1 and BRCA2 genes, commonly referred to as the “breast cancer genes.” Mutations in these genes have been linked to significantly increased breast and ovarian cancer risk in women. In the mid-1990s, the biotech company Myriad Genetics,

Inc. acquired dozens of patents on these genes, including the genetic material and the DNA sequence, all known and unknown mutations in that sequence, and any variations in the genes that might be discovered in the future. These patents not only gave the biotech company rights over the human biological substance, including all of its potential futures and prospective values; they also provided the corporation with a legal monopoly over the use of these genes in cancer research, diagnostics, and treatment for twenty years. Unlike other biotech companies that have collaborated with advocacy groups and medical researchers to find the best diagnostic and treatment solutions for patients, Myriad has aggressively enforced their legal right to exclude others from accessing, researching, or testing for

BRCA1 and 2 gene mutations on a national and international scale.54 In response to this monopolization of the genes, the American Civil Liberties Union (ACLU), joined by patients, researchers, nonprofits, and medical organizations, filed suit against Myriad, claiming that the company’s patents on the BRCA genes were hampering research toward better forms of treatment and diagnosis, and denying people access to important information related to their genetic materials. The case had gone through the Southern !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 54 See Lane Baldwin and Robert Cook-Deegan 2013. On the international tangle of litigation over the patents, see Shobita Parthasarathy, 2007 and Nayanah Siva, 2009.

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District Court of New York in 2010, where the patents were denied, and then the Federal

Circuit Court of Appeals in 2011 and 2012, where the patents were reinstated before finally reaching the Supreme Court in Spring 2013.

A range of ethical, scientific, and economic concerns tugged at the seams of the case in popular debates among patients, researchers, investors, and economists outside of the court. Yet for the Justices inside the courtroom, the decision in the case hinged on a technical issue that, by all appearances, sidelined these issues: the judges were tasked with determining whether the genes were a product of nature or a product of human invention.

The most fundamental criterion for patent-eligibility for any entity, art, or process is that it must be a novel human invention. According to the Patent Act of 1790, one can patent

“anything under the sun that is made by man.” As outlined in the patent law’s Product of

Nature Doctrine, a “novel invention” is something that has not previously existed in nature.

The work of the Supreme Court Justices on April 15, 2013 was to determine whether the

BRCA genes had been altered or fabricated sufficiently as to be entirely new, human-made, and therefore patentable compositions of matter. That is, the court had to draw a line between human nature and human artifice.

As the arguments around this question unfolded before the Supreme Court, it became increasingly clear that the boundary between the natural and the artificial is anything but obvious. During the oral arguments, the Justices produced a litany of analogies to help them grope their way to a distinction between bodily natures and laboratory cultures, as they grappled with defining what “nature” is to begin with (is a gene in a human body technically unmodified “nature”?) and how much nature is modified in the process of isolating a gene

(if a gene in the body is nature, does a gene become something markedly different when it is removed from this environment?). They drew connections between isolated genes and

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baseball bats, the ingredients for chocolate chip cookies, the extraction of livers and kidneys, the information contained in computer binary codes, and the removal of hypothetical plants from the Amazon.

In what follows, I examine the ways in which different actors within and beyond the courtroom staged the ontological knottiness, incoherence, and multiplicity of the properties of the gene specifically, and of genetic “nature” as property in general. This explicit engagement with ontological questions differs markedly from most other cases regarding biological property. In recent history, biological patenting cases have taken as their starting point two things: (1) a very clear, unquestioned understanding of the matter at hand – isolated liver cells are human-made technologies in Moore v. Regents of California (US Supreme

Court 1990), genes are modified chemical compounds in Amgen v. Chugai Pharmaceutical Co.

(US Federal Circuit Court 1991) -- and (2) an a priori acceptance of the discontinuity between the human/“natural” source of the biological materials and the “artificial” biological invention. In other words, they began from the premise that a gene or cell ceases to be part of a human body when it is removed from the bodily environment, and that the human body is itself nature.55

In the Myriad case, however, the very matter of what a human gene is gets unsettled – is it a chemical compound, a unit of information, a piece of a human body? This chapter examines the definitional quandaries that emerged in Myriad around what constitutes a gene and is legislation of the increasingly unclear distinction between genetic nature and genetic artifice, as an entry point into theorizing changing configurations of nature and property in

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 55 For more on how and why this strategic distinction has been drawn, see Hannah Landecker. 1999. “Between Beneficence and Chattel: The Human Biological in Law and Science.” Science in Context, 12(1): 203-225. See also, Jane Calvert and Pierre-Benoit Joly. 2011. “How did the gene become a chemical compound? The ontology of the gene and the patenting of DNA.” Social Science Information, 50(2): 157-177.

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the US. Through this legal case, I illuminate how various social actors are increasingly staging the ambivalence and internal incoherence of scientific objects such as genes, rather than naturalizing them as coherent or essentialized entities, and speculate on what this might suggest about enduring epistemic and social anxieties in Western civilization around the nature of mimesis. Specifically, I trace questions about the very nature of nature, the artifice of artifice, the nature of artifice, and the artifice of nature as they are articulated around biological property in the juridical domain. I begin with a brief overview of some of the major arguments for and against human gene patenting, contextualizing them within a more enduring history of patenting biological materials in the US. I then go on to analyze key moments in the Supreme Court case in which the ontological ambivalence of epistemological objects such as “nature” and “genes” is shown up. I conclude with some thoughts on what this practice of staging nature as simultaneously natural and constructed might suggest about the theatrical conditions of knowledge production and property ownership in the historical present. As Bert O. States has written, “What happens, when it happens, in the theatre, is, as Shakespeare’s Polixenes might say, art. But the art itself is nature” (States 1987: 47). Conversely, one could say, what happens, when it happens, in science, is art. But the art – or artifice – is itself nature.

Biological Properties, Or the Legal Lives of “Life Itself”

The Myriad case is not the first instance in which the patenting of biological life – particularly human biological materials – has been challenged in recent US legal history.

Although the landmark US Supreme Court case in 1980, Diamond v. Chakrabarty, legalized patenting living things, people did not readily accept that this decision should extend to the patenting of lively human matter. In 1990, in Moore v. Regents of the University of California,

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cancer patient John Moore sued his doctors at UCLA and the affiliated Genetics Institute,

Inc. and Sandoz Pharmaceuticals over who owned the cells excised from his spleen when he was being treated for leukemia. Courts decided in favor of the researchers, claiming that

Moore’s ownership of his own tissues might hamper socially valuable research. A precedent had already been set in many ways by the untried case of Henrietta Lacks – a poor African-

American woman whose cervical cancer cells were taken by her physician without her consent in the early 1950s and transformed into highly valuable immortal cell lines that still are widely circulated and used in research today. In the Moore case, the defense cited the example of Lacks to support their argument that cells had already been technologies for forty years at the time of the trial. Once extracted from a human body and subjected to the process of culturing in the laboratory, they argued, the cells had lost all connection or

“likeness” to the human body. (This is a peculiar argument that we will return to later, as this assertion that cells lose their connection to the human body when extracted is undermined by the fact that it was the very particularities of the bodies from which these cells were extracted that lent them their technological capabilities in and beyond the laboratory).56

Further, from a utilitarian standpoint, the argument was made by the court that even if Lacks or Moore had retained ownership over their extracted cells, there was nothing new or useful that they could have done with them. As Sheila Jasanoff explains in her 2012 essay, “Taking

Life,” according to the courts, as long as the cells remained lodged in the bodies of the patients, they rendered no value to their hosts. In fact, they were producing a harmful, incurable, and terminal disease (cancer). These cells were also of no value to society as long as they resided in their “natural” environments because they were being hindered from their !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 56 Sheila Jasanoff details this central contradiction as it inhered in the Moore decision: “Moore’s cells were deemed to be present in all human beings, thereby ruling out his claim to uniqueness; but they were at the same time held to be novel enough as generators of lymphokines to justify the researchers’ patent claim” (2012: 169).

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potential to enter into economic production, circulation, and use as potentially lifesaving technologies. It was only when they were “cut loose from context and allowed to exist in their own right, [that the cells] became the raw material for an ‘immortal cell line’ of possible therapeutic value, which could be instrumentally used to cure other people” (2012: 169).

At stake in the Moore decision was the economic and social utility of the cells, not their ontology. In this case, the bodies of Moore and Lacks were not only framed as peripheral to their extracted cells, but they were actually seen as impediments to the use of these cellular technologies to do good. As evidenced in the case of Moore, in order for human biologicals to become patented technologies, they must be unhinged from their human source: the body from whence the lively matter is extracted often gets relabeled as the “raw material,” and then the extracted material is renamed as something altogether else such as “purified substance” or “chemical compound,” that implies the labor of inventor, rather than the laboring body of the donor. As legal scholar Jonathan Kahn explains this process in the context of DNA patenting,

Just as the designation of ‘wilderness’ erased Indians from the land (figuratively and literally), rhetorical reductions of DNA to ‘chemical compounds’ erase the presence of the human subject from genetic material and so facilitate the new gold rush to patent genes” (Kahn 2003: 427).

This strategic erasure of subject from substance is essential for the materials to enter into the commercial scientific apparatus for two reasons. First, the foundational capitalist process of primitive accumulation, as theorized by Karl Marx and later updated by David

Harvey as “accumulation by dispossession,” relies on a process of converting common territory into privately owned property. In short, it is theft by legal means. In the context of biotechnology, this scale of reterritorialization moved to the cellular level through the

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“industrialization of medicine” that emerged in the 1970s.57 It is only through isolating and redefining particular cellular properties as not human natures, but second natures invented by human cultures that these common biological properties could be seized and then put into circulation in commercial research and scientific enterprise. Catherine Waldby refers to this process as the production of “biovalue” (2002), while Sarah Franklin describes it as

“biological enclosure” (2007). Second, in lab research, it is necessary for genes to be isolated and purified from their broader contexts, associations, and environments for them to be employed as effective, pliable, measurable, and reliable technologies for use in everyday research. (Of course, this framework is more of an ideal than a reality).

This double act of dispossession was naturalized in the Moore case, in which courts began from the premise that cell lines were an artificial technology. As Hannah Landecker has argued in relation to the case, “the distinction between original tissues and ‘biological inventions’ is asserted as something given rather than something worked out by any particular logic” (Landecker 1999: 208). At no point, did they ask, “What is a cell line?” or

“What is the relation between a person, the cells of her body, a cell line, and the interested scientists?” (207). Through this omission, it was reasoned that extracted and cultured human cells were patentable because (1) they were “legally and factually distinct” from the original cells in the body and (2) because they had a newly useful function through their capacity to circulate. These two factors were, however, deeply intertwined. The cell lines were not legally and factually distinct because of their actual or asserted difference from cells in their hosts’ bodies; they were “new” based on the precedent of Judge Learned Hand’s 1911 decision that a purified form of the hormone adrenaline was patentable even though it was

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 57 Sociologist Adele Clarke and her colleagues (2010) have described the “industrialization of medicine” as a key feature in the technoscientic transformation of American medicine from medicalization to biomedicalization that crystallized in the 1980s.

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“merely an extracted product without change.” According to Hand, because adrenaline had been made available for new and important social uses, “it became for every practical purpose a new thing commercially and therapeutically” (Parke-Davis & Co. v. H.K. Mulford

Co., quoted in USPTO, 2001: 292). That is, the cells, like the hormone adrenaline, were only distinct from the body insomuch as they had a new and different practical function, not because they were new and different things in an ontological sense. The commercialization of human cell lines like Mo and HeLa (Mo for John Moore and HeLa for Henrietta Lacks, ironically named after the people whose now-dead bodies were seen as impediments to their cancer cells’ immortal lives) was thus enabled in large part by the court’s tacit assumption that these biological materials were distinct from their human sources because they served a new function, and were thereby patent-eligible.

This utility argument, as it has been upheld in the Moore decision and others like it regarding patents on biological matter in the 20th and 21st centuries illustrate what Jasanoff has described as “the inclination of property law to put otherwise unproductive inanimate matter into circulation, creating economic value” (2012: 168). However, this inclination points to a definitional quandary in biological property law: how can one define biological properties as unproductive or inanimate before they are transformed into property, as though property itself somehow magically breathes life into these (living) dead bodily substances? The answer is simple if we follow a Marxist reading of political economy: so long as biological materials remain confined to living bodies, they are dead capital. (And of course, this argument could be extended to the lively materials of land/nature/”wilderness”

– animals, plants, microbes). According to Marx, capital is dead until it is brought to life by labor: “Capital is dead labour, that vampire-like, lives only by sucking living labour, and lives the more, the more labour it sucks” ([1897] 2011: 257). Living materials are only living,

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according to a capitalist logic, insomuch as labor can imbue them with life by giving them value and putting them into circulation. In this way, attempts in recent decades to privatize life forms (such as bacteria and animals) and forms of life (such as cells and genes) as productive and saleable forms of private property are central to the capacity of capital – as value – to live through the commodification of life itself.58 The enclosure of the biological commons – the dispossession of personal ownership over one’s own “dead” bodily substance through the patenting of life as the product of invention (i.e. scientific labor) – has allowed for the accumulation and circulation of lively capital as a profit-generating and potentially life-giving force within the promissory economies of science.

In Association of Molecular Pathology v. Myriad Genetics, the major pharmaceutical companies and large financial firms clamoring to the defense of Myriad’s gene patents trotted out this logic, as they figured for-profit scientific enterprise as an animation machine that brings dead biological capital to life through privatization and subsequent financialization, made possible by the living labor of scientific innovation and making possible the production of novel, socially useful goods. According to this premise, commercial scientific research produces socially valuable products – new cancer drugs, new biological and information technologies, new pesticide-resistant crops – and bolsters the flagging economy through the circulation of these commodities (Newfield 2003: 176). This errant conflation of moral value with monetary value undergirds the Bayh-Dole Act, passed by Congress in 1980, which formalized attempts that were already underway to enclose a different commons: tax-funded research. This policy encourages researchers to gain private

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 58 For more on the complex entanglement and mutual production of political economic forces and biotechnological developments such as genomics, see Kaushik Sunder Rajan’s Biocapital: The Constitution of Postgenomic Life (2006) and Melinda Cooper’s Life as Surplus: Biotechnology and Capitalism in the Neoliberal Era (2008).

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ownership over their publicly funded findings, under the assumption that the scientist- entrepreneur can take greater risks in her research and more easily translate these risks into financial and social gains by partnering with industry to bring the research to market at an accelerated rate. Within this interpretation of scientific research that is premised upon a twofold capacity of privatization to bring dead communal property to life – first through animating biological substances through scientific labor, and second, by transforming this tax-funded scientific research into profit through circulation and consumption – limiting gene patents would be disastrous. Denying property rights over DNA would not only remove protections from the booming US biotech and pharmaceutical industry, potentially endangering its status as a world leader and crippling the US economy, but such measures would also dis-incentivize costly, risky, time-consuming research and potentially slow down drug development and technology transfer.

Yet – and here is the particularly baffling part – the very mechanism by which cells or genes, in the shape of publicly-funded, collectively-researched, privately-owned biotechnologies, can circulate and generate value is precisely their biological continuity with human subjects. That is, in order to have social and economic utility as health technologies, biological substances which have been alienated from their “host” bodies must be re-aligned with human subjects – both the general public who will potentially benefit from research, as well as specific populations who will consume highly personalized therapies and technologies that have been developed from non/human biological materials. This re-alignment between biological substance and human subject is particularly notable in popular discourses and marketing campaigns that constellate around genetics. For example, in his early lectures on the new genetics, Nobel Prize-winning Harvard molecular biologist, Walter Gilbert would begin his speeches by holding up a compact disc with the sequence of the entire human

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genome on it, while stating to the audience, “This is you” (Nelkin and Lindee 1995).

However, even as the patenting of genes enables research like Gilbert’s (who, incidentally co-founded Myriad Genetics, Inc.), it simultaneously de-natures this link between genes and personhood further upstream, severing the connection in order to enable commercial scientific research to transform genes into generic (yet highly personalized) medical technologies.

This is a key paradox that animates patients’ concerns about gene patenting in the legal suit against Myriad: if my genes are me, then how can my genes simultaneously not be me, and not even be mine? How and when does my DNA cease to be mine and become a chemical compound, a patentable invention owned by someone else? How and when does it convert back to being mine? Further, why does an industry that claims to be producing lifesaving technologies put profits before access? These concerns are made apparent in the

“Take Back Your Genes” campaign, sponsored by one of the plaintiffs in the Myriad case, the American Civil Liberties Union (ACLU). In this campaign, researchers, patients, and activists sent in pictures of themselves holding a sign that reads: “I take back my genes,” accompanied by a story or critique about how patents on the BRCA genes have negatively impacted them. Crucially, these women are taking back their genes, not buying back Myriad’s genes. In one picture, Caitlin, a coordinator with the breast cancer activist group, Breast

Cancer Action (BCA), grimaces into the camera as she displays her sign. In the text beside her photo, she writes,

When I underwent genetic testing, seeking to know whether I carry a genetic mutation that puts me at increased risk of cancer, I was dismayed to learn that a part of my body is patented…I am outraged that 80 percent of Myriad’s profits come from a patent on information about our own bodies. I am outraged that a court granted a corporation ownership over a part of my body. For me, and for all the women and men who deserve access to information about their bodies… I take back my genes (figure 2) (“Take Back Your Genes” 2013).

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Figure 11. Screen shot of ACLU campaign to “Take Back Your Genes” (2012). © ACLU

Caitlin’s language is strategic, as she marshals a rhetoric of genetic properties that is at odds with financial and legal configurations of genes as property. The BRCA genes are “a part of my body” and “information about our own bodies.” Both descriptions undercut precedent legal definitions of a gene as a chemical compound, as a scientific invention, as a marketable entity; it is illegal to sell human “body parts” on a commercial market and it unlawful to claim ownership over a law of nature, which the label genetic information implies (we all have a genetic code). This insistence on tethering the bodily, natural, and personal properties of life to genetic discourses also speaks to the social lives of genes in public cultures: genes have become important actors in mimetic rituals of surrogation and subjectivation in both clinical and criminal contexts, as these copies are differently mobilized in processes of substituting bodies and fashioning selves. In many ways, our genes are us in a colloquial sense. In the context of medical diagnostics, for example, the DNA contained in Caitlin’s

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blood sample, which she sent to Myriad for testing, stood in for her body and promised to disclose a truth about her individual biological make-up. For those like Caitlin who carry a known mutation in a BRCA gene that increases cancer risk, knowledge of their genetic status conferred by this DNA test often recasts their identity from healthy to “pre-diseased,” from normal to “mutant.”59 Beyond the biomedical context, the domain of criminal justice has routinized the process of DNA fingerprinting (upheld by the Supreme Court in the same year as the BRCA gene patenting suit), which also relies on legal and juridical understandings of genetics as inextricable from identity; my DNA is my unique fingerprint that can allow law enforcement officials to incontrovertibly link me to a crime.60 It is the “gold standard” of criminal evidence because I am my DNA; my genetic copy is me. In fact, DNA fingerprinting is simply an extension of the colonial logic of fingerprinting that relied heavily on the disciplining authority of this mimetic contract. According to Sir Francis Galton, father of eugenics and author of the 1892 text used to establish fingerprinting as a mode of state surveillance, Finger Print, Sir William Herschel informed him that because “it was so hard to obtain credence to the signatures of the natives, that he thought he would use the signature of the hand itself, chiefly with the intention of frightening the man who made it from afterwards denying his formal act” (Galton [1892] 1965: 27-28, quoted in Taussig 1993:

222).61 Both of these everyday examples render explicit the fetish power of the gene: through

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 59 For more on this process of transitioning from not-yet-sick to no-longer-well through genetic testing for BRCA genes, see Nye, Coleman. 2012. “Cancer Previval and the Theatrical Fact.” 56, 4 (T216): 104-120.

60 Of course, as is increasingly the case in genomics, recent scientific studies have shown that DNA can be artificially produced in a laboratory or simply fabricated at a crime scene, thereby undermining this claim to originality and uniqueness. See Andrew Pollack. 2009. “DNA Evidence Can Be Fabricated, Scientists Show.” New York Times, August 17.

61 While it is not clear who “natives” were in Hershel’s letter, the first people who were subjected to fingerprinting in the US were Native Americans and prisoners.

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intimate contact with the original, the copy takes on its properties and power, to the point whereby the copy gains the power to influence that which it portrays (Taussig 1993). Genes are not unfettered chemical compounds or mere copies of bodily originals; they are inextricably entangled with biopolitical projects at both intimate and institutional scales.

This likeness between humans and their genes is precisely why DNA can be used for biomedical research and in diagnostic technologies to begin with, even as the legal feat of corporate ownership of DNA is premised upon highlighting the unlikeness between human and gene.62 Thus, commercial biotechnology is manifested through a range of strategic inclusions and exclusions of the human/living (bios) aspects of biotechnology. In many ways, it is the constitutive undecidability of extracted biological materials – as both living and dead, both animate and inanimate, both human and non-human, both natural and artificial – that has allowed them to circulate within a promising bioeconomy that reconfigures bodily matter as a highly valuable social and financial resource.

A Gene Is a Gene Is a Gene? [I]f the genealogist refuses to extend his faith in metaphysics, if he listens to history, he finds that there is ‘something altogether different’ behind things: not a timeless and essential secret, but the secret that they have no essence or that their essence was fabricated in a piecemeal fashion from alien forms… What is found at the historical beginning of things is not the inviolable identity of their origin; it is the dissension of other things. It is disparity. - Michel Foucault, “Nietzsche, Genealogy, History”

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 62 In making this claim, I am indebted to Hannah Landecker (1999), who develops a compelling analysis of the simultaneous discontinuity and continuity between cell and person in the case of immortal cell lines. Kahn (2003) makes a similar point about DNA in his article. Later in my argument, I will build on this claim to suggest that this simultaneity, rather than being effaced in legal domains or sequestered to the safe experimental space of the laboratory, is increasingly being staged in public discourse and practice.

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Figure 12. Genetic code

gene Gene is gene is a Gene gene Gene is gene Gene is a genealogy is a Gene Genealogy gene Is a is a a as a Genealogy as a gene as a Genealogy Is genealogyealogy Mutation mutation mutation mute Gene

GAAGGGAGGAGGGAAGGGAGGAGGGAAGGGAGGAGGAAGGGAGGAGGGAAG GGAGGAGGGAAGGGAGGAGGGGAAGGGAGGAGGGAAGGGAGGAGGGAAGG GAGGAGGGAAGGGAGGAGGGAAGGGAGGAGGGAAGGGAGGAGGGAAGGGAG GAGGGAAGGGAGGAGGGAAGGGAGGAGGGAAGGGAGGAGGGAAGGGAGGAG GGAAGGGAGGAGGGAAGGGAGGAGGGAAGGGAGGAGGGAAGGGAGGAGGGA AGGGAGGAGGGAAGGGAGGAGGGAAGGGAGGAGGGAAGGGAGGAGGGAAGG GAGGAGGGAAGGGAGGAMMMM

In his 1957 Marjorie Stephenson Memorial Lecture, microbiologist and Nobel laureate André Lwoff ended his talk on viruses with, as he put it, the “prosy, coarse, and vulgar” statement that “Viruses should be considered as viruses because viruses are viruses”

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(Lwoff 1957: 252). Riffing no doubt, on Gertrude Stein’s oft-repeated phrase from the 1922 poem Sacred Emily, “rose is a rose is a rose is a rose,” the scientist plays between continuity and difference. Strung together in Lwoff’s repetitive prose, viruses emerge out of viruses and double back on themselves, strings of viruses that are related (viruses should be considered as viruses) that are still, somehow not quite the same (because viruses are viruses). As any good scientist or social scientist of scientists would tell you (albeit in different words), a virus is a virus not because it is a virus, but because it is iteratively enacted into being as a virus through various discursive and material practices. When the iterative process that makes a virus a virus is successfully covered over, or in Bruno Latour’s terms “black-boxed,” it appears to be a point of fact: a virus is a virus because it is a virus.

Extending this constitutive prose to the gene, it becomes possible to see the play between “pure” repetition (replication) and repetition’s constitutive difference (mutation) in the phrase, “a gene is a gene is a gene.” Genes, like viruses, are indistinct entities defined by movement between beingnesses, not by ontological stasis. As historians and sociologists of science have artfully shown time and again, rather than being defined by any essential trait, the gene – or any object of knowledge for that matter – develops its materiality and meaning through the instruments that are employed in the context of its study (c.f. Latour 1987;

Haraway 1997; Rheinberger 1997; Mol 2002; Barad 2007). In short, different questions and practices produce different objects, and all of those ontological disparities and dissonances populate everyday understandings of what makes a thing a thing. So, if we use a genealogical method to strip away the layers and attempt to excavate the gene’s core, its essence, what will emerge is less the discovery of an essence and more an act of implosion. That is, the essence of the gene, of this true-original copy, is that it has no essence. For, “what is found at the historical beginning of things is not the inviolable identity of their origin; it is the

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dissension of other things. It is disparity” (Foucault [1977] 1991: 81). It is repetition. It is disparity. Again. The “prosy,” tripping phrase, “a gene is a gene is a gene” captures different moments of gene-ness as they congeal to make a gene a gene. Gene as copy, gene as unique, gene as nature, gene as chemical, gene as culture, gene as identity, gene as information, gene as concept, gene as property, gene as risk, gene as heredity, gene as genealogy. Meaning proliferates. Every “is” somersaults into an “as” before it is again, as another. A gene is a genealogy is a gene. To repeat: “What is found at the historical beginning of things is not the inviolable identity of their origin; it is the dissension of other things. It is disparity.”63

Arguably, this mimetic, co-constitutive nature of things has historically been embraced and staged more readily under the conditions of (social) scientific research practice than in acts of legislation or in practices of everyday life. Indeed, science is one of the most privileged sites in which the mimetic faculty is at work. That is, as Michael Taussig has written, it is a key space in which humans employ “the nature that culture uses to create second nature, the faculty to copy, imitate, make models, explore difference, yield into and become Other” (1993: xiii). For example, in his recent history of the twentieth-century life sciences, Hans-Jorg Rheinberger draws on the work of biologists to show that the definition of a gene necessarily changes over time and across disciplines. In fact, any unified concept of the gene – any ascription of essence – would undermine scientific research, which traffics most generatively in “fuzzy concepts” marked by imprecision and mobile boundaries that allow the researcher to “explore difference, to yield into and become Other”:

As long as epistemic objects and their concepts remain blurred, they generate a productive tension: they reach out into the unknown and as a result they become research tools. I call this tension ‘contained excess.’ In a similar context [biologist] Francois Jacob speaks of a ‘play of possibilities.’ In writings by leading contemporary !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 63 In developing this argument about again-ness, I draw on Rebecca Schneider’s theorization of time and repetition in her 2011 monograph, Performing Remains: Art and War in Times of Theatrical Reenactment. New York: Routledge.

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molecular biologists, we often come across very loose definitions of the ‘gene’ – if we find definitions at all (2010: 156).

To demonstrate this mimetic “play of possibilities,” Rheinberger gives a few examples of the divergent definitions of genes that might emerge in different disciplines’ experimental systems. In biochemistry, DNA will likely be defined by its unique chemical properties. For molecular geneticists, genes are better understood as informational elements marked by their functions in the cellular environment: replication, transcription, and translation of heredity units. In research on evolutionary genetics, scientists focus more on the genetic mechanisms of transmission and change over longer lineages such as duplication, mutation, reshuffling, and contingency. Developmental geneticists might study the regulatory nature of genetic circuits (158). And this is, of course, only in the laboratory setting. If we move into other epistemic systems – clinical genetics, pharmacogenetics, criminal genetics, classical genetics, family trees, to name only a few – boundaries move, definitions change, functions vary, copies abound.

In everyday life, these disparities tend to be stifled by the suffocating simplicity and obviousness that inheres in the black-boxed phrase, “a gene is a gene because it is a gene.”

However, in certain moments, the dissension of things clamors to the fore and renders explicit the competing practices and moving parts that make up the apparatus of knowledge production. In recent years, murmurs and tremors have started to shimmer through the sciences in the shape of public debates about the ambiguity of the gene. In 2006, an essay entitled “What Is a Gene?” appeared in the leading science journal, Nature. The author,

Helen Pearson, describes the growing difficulty of comparing and sharing data around the same research object – the gene – when the object itself is so unruly. According to a scientist at UC Berkeley who was attempting to coordinate such efforts for a “Sequence Ontology”

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consortium, it took 25 scientists a full two days to come up with a shared definition of a gene. “We had several meetings that went on for hours and everyone screamed at each other,” she told Pearson (2006: 401). In many ways the intensity of this debate can be attributed not only to differences in experimental systems, but also to the “mind-boggling complexity” of genes, as very the idea that they are discrete entities is being challenged by recent studies that have found genes within genes, overlapping genes, and other “weird arrangements” (399).

As controversies gain momentum and begin to traverse different spheres of contestation, they make apparent “the competing, fractious voices; the contradictory facts; and uncertain compromises that are the world of knowledge production” and show up the everyday work of individuals and institutions in maintaining the taken-for-grantedness of genetic knowledge (Dumit 2012: 32; Latour 1987). This “dissension of things” at the heart of the “gene” starts to bubble up in the first iteration of the Myriad patenting suit in 2010 at the

US District Court for the Southern District of New York. Rather than looking solely at the new utility of the gene as judges have done in the past, Judge Sweet began to grapple with its ontology, challenging the driving assumption that had undergirded most human biological patenting decisions up to this point: that a gene is a chemical compound that is distinct from the human source. Sweet noted, “Genes are of a double nature: on the one hand, they are chemical substances or molecules. On the other hand, they are physical carriers of information… Thus, inherently, genes are multifunctional” (Association for Molecular Pathology v. USPTO 2010). Genes are both chemical molecules and highly individualized sequences of information. While this decision only began to stage some of the complexity of genes, Sweet nonetheless took a radically less reductive view of DNA than previous decisions, as he pointed to the doubleness, or constitutive duplicity, of a gene, while also foregrounding its

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relation to the human source. Sweets suggested that this dual nature of DNA – as both function and substance – is unique to genes found in human bodies, and that isolating genes from the body does not change this uniqueness. Based on this definition of the gene, Sweets came to the decision that isolated DNA is unpatentable subject matter because it is “not markedly different from native DNA as it exists in nature” (ibid).

While this decision was overturned in its next iteration in the Federal District Court, in which Judges returned to an earlier understanding of the gene as a chemical compound distinct from its human source, these ontological questions about how human an isolated human gene actually is resurfaced with a vengeance when the case came before the US

Supreme Court. In the oral arguments on April 15, 2013, there was an increased emphasis on parsing the distinction between the “thing” itself and the function of the thing, as Justices asked: Does isolating a gene from a body make it new or does it simply make it available to new uses? Myriad’s argument was that the thing itself was new because the isolated gene was shorter than the gene in the body – scientists had made an effort to figure out where to separate it from the larger strand of DNA and this short, isolated strand did not exist before they did this work – and they argued that the genes had a new use outside of the body – they could be used to determine women’s breast cancer risk. The Association of Molecular

Pathology argued that the thing was not new at all – these short strands are actually naturally occurring in the body due to different viruses that break genes and create fragments – and that the new use for the genes was not “new” either, but obvious and commonplace in everyday scientific practice.

Beyond these technical opinions about the nature of the isolated BRCA genes, ethical and economic concerns perforated the arguments, as Myriad’s defense gestured toward the necessity of maintaining the economic incentive structure of patenting and the

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Association for Molecular Pathology (AMP) stressed the potentially inhibitive effects this property law might be having on genomic research. Since I already laid out the economic incentive argument, I will provide here a brief overview of the competing claim, which argues that these incentive structures fetter research and development. A number of scientific researchers (including James Watson – one of the scientists credited with the discovery of the double helix structure of DNA) submitted briefs in support of the plaintiff,

AMP, voiced a growing apprehension about how and where genetic information is being used and shared, stressing that the patents on the genes would deter others from researching the genes, thus hampering valuable and potentially lifesaving research. Genomic scientist at

Harvard and MIT’s Broad Institute, Eric Lander, whose amicus brief played an important role in the Supreme Court decision, has been outspoken against the patenting of unmodified

DNA. He suggested that the patenting of genes has “balkanized” the human genome: by parceling it up into small privately-owned pieces, patent law has restricted communal access to genetic materials and related research data, leading researchers to neglect large areas of potential research and innovation. Indeed, many scientists shared this concern that, far from encouraging innovation and progress, patents were leading to the emergence of a scientific

“anti-commons” through a recent molecular surge in primitive accumulation that has broken up the genome into “small fiefdoms of intellectual property” (Heller and Eisenberg 1998). In support of these claims, a recent publication by MIT economist, Heidi Williams, has shown that 20-year gene patents have chilling long-term effects on health research and innovation

(Williams 2013) and the US scientist who is often credited with the actual discovery of the

BRCA genes, Mary-Claire King, has spoken out against gene patenting (when she localized the genes in a massive global project funded by the NIH among other public institutions and private companies in the 1990s, she declared that she would not patent them; unfortunately,

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Mark Skolnik and others at University of Utah who co-founded Myriad beat her to the final sequence). While all of these concerns permeated the oral arguments, popping up in particular moments, receding in others, the case nonetheless took as its central point of contention the Product of Nature Doctrine: Was the BRCA gene an unpatentable product of nature or was it a patentable human invention?

In order to understand the distinction between the isolated “gene” itself and its

“natural” human source, the Justices scaled up from the cellular level to the level of human organs. Justice Kagan asked the council for Myriad, if we could patent something like DNA,

“we could just go up from there and talk about all kinds of parts of the human body, couldn’t we? Couldn’t we get to, you know, the first person who found a liver?” (Association of Molecular Pathology v. Myriad Genetics, Inc. 2013 transcript: 23). Justice Breyer jumped in saying, “ Well, that’s the problem. I mean, all parts of the body? Anything from inside the body that you snip out and isolate?” He continued, “Everything is inside something else.

Plants, rocks, whatever you want. And so everything will involve your vast [sic] taking something out of some other things where it is, even if it is the environment. And it’s at that point that I look for some other test than just that it is found within some other thing” (24).

Two particularly compelling issues emerge from this line of questioning. First, Justice

Kagan is not taking for granted that human genes are technologies that are necessarily distinct from the human body. She is comparing them with other technologies such as human organs that cannot be patented because (a) they are not inventions, but nature and

(b) selling body parts veers dangerously close to selling bodies, touching on painful legal histories regarding personhood and dispossession in the context of slavery (c.f. Landecker

1999: 215). Second, Justice Breyer makes a strangely quantum argument that unsettles the given-ness of objects of nature and de-naturalizes the nature of property – he is saying that

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everything is within everything else, and the process of drawing that line between two things does not render those things (forest and plant and cell, rock and particle and atom) as essentially distinct, but rather pragmatically distinct. Boundary-drawing is a practice that separates, but does not unveil true essences or imply full authorship.64 So, clearly, there needs to be some other work involved in transforming a thing into an invention. This fitful process of determining the location of nature in “human-made” biotechnologies – is it the human DNA in the technology? – and the role of culture in defining this nature – is culture the human labor that transformed natural human DNA into a technology? – makes explicit feminist philosopher of science, Karen Barad’s assertion that “we are a part of that nature that we seek to understand” (2007: 26).65

This brings us to a particularly gnarly question about how, why and when to distinguish between nature and culture, real and artificial, human and non-human – and where private property fits into this tangle – in a world in which they are inextricably intertwined. Counsel for the defense for Myriad, Gregory A. Castanias, starts to touch on this nagging problem in his argument. Castinias starts by saying, “Now remember, genes are themselves human constructs.” He continues, “And this points up some of the serious analytical problems with the Product of Nature Doctrine as a line-drawing exercise… Now the line-drawing is what is the product of nature to start with? Is it me? Is it the genome? Is

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 64 To be clear, while I suggest that Justice Kagan is doing this, I do not imply that her ecological understanding of the entanglement of nature and culture is being taken up in any meaningful way by the Supreme Court. To actually operationalize this assertion in a serious way would likely require a massive restructuring of our justice system in order for it to work across both temporal and spatial scales of relation and responsibility among both human actors and non-human actants. In fact, as I argue later in the chapter, these definitions of nature indicate collective anxieties about the dissolution of some pure category of “nature” and demonstrate a desire to find a way to newly stabilize this category and quell this “binary terror,” to borrow a phrase from Rebecca Schneider (1997).

65 For how Barad relates this explicitly to performativity, see her 2003 article “Posthumanist Performativity: How Matter Comes to Matter.”

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it the chromosome? Is it the – and the gene ultimately – is what is defined” (Association of

Molecular Pathology v. Myriad Genetics, Inc. 2013 transcript: 14-15). Here, Castanias suggests that there is no nature “out there”; genes and nature are continually under social construction.

Yet, he is making this point so as to argue that more or less everything in “nature” therefore can be patented and sold (a dangerous appropriation of social constructivism). However,

Castanias’s argument, taken to its logical extreme, would go as follows: we can patent human subjects because, after all, human subjects are constructed by human culture, and culture is an artificial human invention. While Castanias would surely challenge my rendering of his argument at its ultimate conclusion, he nonetheless exposes how the very logic that undergirds the legal doctrine of patenting “anything under the sun that is made by man” threatens to topple itself if it fully accepts that not only is nature a human construction, but the human is made by humans (veering again dangerously close to a disturbingly near set of historical legal procedures that figured humans – particularly slaves and women – as private property). Such an argument lays bare a serious set of absurdities that inhere in the process of patenting life, as it jostles up against the limits of its very premise that humans are not part of the (human/cultural/second) nature they seek to understand.

But, of course, this is precisely the nature of law, isn’t it? To settle controversies, to draw lines, to set limits, to stabilize objects. The more deeply I climb into this case, the more

I think that its main goal was to resolidify the leaky boundaries between nature and culture, and to quell rising anxieties around the porosity of this division as it has been staged in recent decades through the incorporation of biological matter into technologies and economies at a dizzying magnitude of scale – from the macro-level (structural, environmental) to the most minute plane of life (cellular, genetic). In reflecting on the case in a public forum at Harvard, Law Professor Robert Boin points to this growing complexity of

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making distinctions between nature and artifice in a historical moment in which this taken- for-granted boundary has begun to dissolve quite visibly and spectacularly through practices of biomimesis, biotechnology, and other forms of manipulating life itself in the sciences.

Boin asks,

Is nature relevant to these decisions? […] You know, it probably was 100 years ago. 100 years ago, when we talked about nature, what we meant was a cup of water or a plant you dig up out of the ground or something like that. You could tell a story where that is not the kind of stuff we need incentives [to develop] and these are the building blocks. But now, nature has changed on us. Nature used to be really simple. Now nature is really really big and really really small [e.g. things that we need an electron microscope to even see…]” (“Gene Patenting, the Supreme Court's Myriad Decision, and the Future of Biotechnology" 2013).

Castanias gestures toward this as well in the oral arguments when he says,

The Product of Nature Doctrine is troublesome for this reason: Modern medicine – go beyond just the gene patents here – Modern medicine, particularly the area of personalized medicine, is trying to get to a point where what we are administering to individual patients is giving them the opportunity to mimic the actions of the body. And – so actually, the goal of medicine is to get closer to nature, rather than farther away” (Association of Molecular Pathology v. Myriad Genetics, Inc. 2013 transcript: 14-15).

While both Boin and Castanias register a degree of frustration with the Product of Nature

Doctrine because it fails to capture the changing realities of scientific research in a moment when “nature” is being manipulated and manufactured at an unprecedented rate and scale, I would humbly suggest that they are missing the point. For law, the nature of nature is precisely what is at stake.

Let me explain. In many ways, none of this is new. As Bruno Latour convincingly argues in his monograph, We Have Never Been Modern, the idea that nature and culture would ever be pure or separate domains is a recent modernist myth produced through a symbolic partitioning of the world into ontologically distinct zones: humans/culture and non- humans/nature. It is not that these zones are ontologically distinct, of course, but that we work incredibly hard to separate the inseparable work of proliferation (or Foucault’s

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genealogical “dissension of other things”) from purification: “The critical power of the moderns,” writes Latour, “lies in this double language: they can mobilize Nature at the heart of social relationships, even as they leave Nature infinitely remote from human beings; they are free to make and unmake their society, even as they render its laws ineluctable, necessary, and absolute” (1993: 37). We see this the Product of Nature Doctrine: the human source of the gene is figured as nature and the human manipulation of the gene is figured as cultural artifice. As the gene enters other spheres, such as when a patient undergoes genetic testing, these distinctions begin to dissolve, but then, again, when we move into the laboratory, they recongeal. If we follow Castinias’s interpretation of the future course of biomedicine and

Boin’s reading of nature’s revisions, then it seems to suggest that this modern partition is crumbling. This growing willingness to stage and play with (rather than covering over) the undecidable difference between copy and original, or nature and culture in the domain of biological life requires more robust and flexible ways of grappling with the trickiness of

(bio)mimesis.

This is where the Myriad decision becomes important. The work of the Justices, I would suggest, was not to reduce this porosity in any meaningful or material way such as by intervening in processes of accumulation by dispossession at the cellular level (oh, but if it were!). The goal was to support the crumbling partition and repress the epistemic anxieties that attend this biomimetic impulse. The Justices must settle this controversy in order to restore the symbolic divide between nature and culture such that, by all appearances, these entities will have returned to their proper places at opposite sides of a modern divide.66

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 66 Here, I draw upon Bruno Latour’s Science in Action, in which he argues, “The settlement of controversy is the cause of Nature’s representation, not the consequence.” (1987: 99).

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Nowhere is the more evident than in the final decision handed down on June 13, 2013.67 The

Court decided that isolated, unmodified DNA cannot be patented because it is a product of nature. In this way, they symbolically reconstituted nature as a domain separate from culture.

Patient activists and scientific researchers were pacified: “We have some of our genes back!”

However, the Court upheld patents on cDNA, which is a lab-manipulated blend of genetic nature and artifice in which the non-coding regions of DNA (introns) are removed in a routine process of reverse replication. cDNA is used in most lab research on DNA, so upholding patents on this type of genetic material does little to slow the commodification and balkanization of human genes through private property rights. 68 Biotech and pharmaceutical companies were pacified: “We still have some of our genes!” In fact, within

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 67 There are key moments in the oral arguments in which it becomes clear that the Justices are trying to clearly define nature as separate from culture. I include below are short description of one section, but it is still in formation and I do not have the time or space to fully develop this argument here. There is one particular analogy that Justice Alito developed early in the arguments and the resurfaced many times. In order to delimit the distinction between nature’s handiwork and human invention in the process of extracting DNA from the body, Alito compared it to isolating a medicinal plant from the Amazon. This choice of analogy – comparing the process of removing a plant in the Amazon to removing a gene from the human body – is, I would venture, worth unpacking. Think back to the rhetorical strategies of erasure at work in property law – renaming the Western frontier “wilderness” or renaming the human body “raw material.” In this case, the human body is being conflated with a vast expanse of wilderness in South America – the Amazon rainforest. While in many ways, this erases the human source from the gene, it simultaneously draws on primitivizing conflations of nature and the body to insist on the “naturalness” of women’s bodies from whom the genes are removed. Women’s bodies are like a medicinal plant in the Amazon. Interestingly, however, this comparison is actually being mobilized in this case so as to argue that women’s “native DNA” is natural and therefore not “authored” through scientific invention and unpatentable. So, the primitivizing discourse, in this instance, is actually doing different work: it is enabling the Justices to settle the question of what makes nature, and therefore what renders something outside of the domain of primitive accumulation. The logic seems to go, “No one would challenge that the Amazon is a nature through-and-through. If we compare the native DNA in a woman’s body to the Amazon, then, it must follow that it, too, is nature through-and-through, and therefore cannot be owned by any single human author.”

68 It has been suggested that an amicus brief submitted by the Office of the President of the United States – a quite unusual occurrence – weighed heavily in this decision, as the Court’s opinion reflects the argument put forth in the brief, while also admitting to an elementary grasp of the scientific reasons for drawing the lines between nature and artifice where they did. Ultimately, it seems like a political compromise: reinstate nature, while making sure that, in doing so, you don’t wreak financial havoc on the science industry.

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weeks of the decision, two small biotech companies – Ambry Genetics and Gene-by-Gene – started offering genetic tests for BRCA1 and BRCA2 genes for a price that was markedly cheaper than the Myriad’s $3500 test, and more comprehensive in the mutations for which it tested. In response, Myriad brought suit against both companies for infringing its remaining patents, and has filed an injunction, meaning that the companies must cease and desist their research and testing on the BRCA genes until the resolution of the trial.

So, I am ambivalent about this unresolved resolution to the case. There is a part of me that is hopeful. I think that the ultimate decision of the US Supreme Court that isolated

DNA is unpatentable is heartening. This case has made it more evident than ever that patenting life may very well be untenable. In fact, it has laid some of the groundwork for global pushback against this alarming trend in both activist and research communities. For example, recently, a global alliance of genomic researchers, in collaboration with patients, has started an international initiative to “Free the Data” (Hayden 2013). Clearly, according to these researchers, the vast thicket of exclusive rights over human bodily substances has limited the use of critical personal and scientific data, is undermining the public good, and must be reigned in. Further, this decision and its aftermath point to the ways in which this tentatively-installed, tenuous legal division between nature and culture is unstable at best.

Definitions are shifting, controversies are erupting, and bodies are on the line in these practices of making up biological matter and meaning. In some ways, it could be argued, human/culture was collapsed back into non-human/nature in the legal decision – the human source is nature, even as the human manipulation is culture – potentially rendering both categories ontologically unstable and open to revision.

But not all revisions or destabilizations are politically promising. Indeed, in reinscribing this division between nature and culture, we risk engaging in an alternate mode

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of primitive accumulation: the accumulation and reification of “nature.” The implications of such a move are troubling. This trend treads unnervingly close to a kind of neo-primitivism, as it registers a nostalgic desire for a return to capital-n “Nature,” while smuggling in violent histories, inequalities, and exclusions that attend such a return to nature’s (still-very-present) colonial past. At the same time, the work of purifying nature – wiping it clean of human agency – risks effacing important ecological entanglements of nature-culture that demand responsible action and an ethics of care on the part of human actors within and toward our densely populated worlds.

And yet, this accumulation of primitive Nature is emerging precisely, I would argue, because we inhabit an historical moment in which it has become increasingly difficult to insist that we are not part of the nature that we create. Mimesis, as generative practice of second naturing and “spacing out,” to borrow a phrase from Michael Taussig, has long been tasked with holding the ambivalence of subjects and objects together, of staging the movement between self and nonself, nature and artifice, copy and original. Unlike performativity, which is marked by a thrall toward ontological coherence (when a performative is felicitous, it effaces the conditions of its construction), mimesis, and its formalized form, theatre, are defined through their constitutive undecidability. Here I draw upon Richard Schechner’s fundamental theorization of the not-not, or both/and in theatre, as the actor on stage is not

Hamlet, but is not-not Hamlet. In theatre, holding this difference together in the same moment undergirds the central contract between the performer and spectator that enables the show to go on. Theatre – as an embrace of mimetic excess, of the potential of meaning and matter to overflow that which purports to contain it – is engaged in a mode of world- making, cracked open, fissured, and partly exposed, that is fraught with the tensions and possibilities of the mimetic impulse. Our ability to mimic and become Other is central to this

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process of making up second natures and doubling them back on themselves. Mimesis is a dangerous game – though, as Aristotle would claim, perhaps the only game in town – that plays between possibilities that veer in multiple directions at once.

But, if we take Bruno Latour seriously in his suggestion that we move beyond a modernist partitioning of the world into nature and culture, we end up with just this process of staging the mimetic excesses of worldly becoming through the theatricalization of “life itself” (Rose 2001):

When we abandon the modern world, we do not fall upon someone or something, we do not land on an essence, but on a process, a movement, a passage – literally a pass, in the sense of this term as used in ball games. We start from a continuous and hazardous existence – continuous because it is hazardous – and not from an essence; we start from a presenting and not from permanence (Latour 1993: 129).

Perhaps we are tending toward this kind of presenting over permanence, and are more often residing in the pass rather than with essence, and with hybrid, proliferating forms rather than with singular, bounded entities. We can see this in shifting ecological understandings of the world – an increased awareness of the porosity of our bodies, as we engage with and absorb other actors such as chemicals, toxins, particles, while also ourselves becoming distributed into and across other actors such as cells, genes, and digital code. Just as in mimesis, our bodies are radically at stake in our world-making practices, as the power of copies is slippery indeed. Presenting is, after all, a hazardous existence. A hazard is a risk, a danger; it is also a chance, a venture. Hence, my ambivalence. For better and for worse, I think many of the questions that emerged in the case around the beginnings and ends of nature, culture, and the body will keep bubbling up in stubborn and unexpected ways, and perhaps (and only perhaps), they will force us to formulate a new ethics of intervention and circulation, as our shared bodies, subjectivities, and environments are so clearly at stake in this mimetic ecology of lively mattering.

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