Regenerating Movements: Human Stem Cells and the Politics of Potentiality by Christopher B. Ganchoff DISSERTATION Submitted in partial satisfaction of the requirements for the degree of DOCTOR OF PHILOSOPHY in Sociology in the GRADUATE DIVISION of the UNIVERSITY OF CALIFORNIA, SAN FRANCISCO Copyright 2007 by Christopher B. Ganchoff ii Acknowledgements This dissertation is the result of the work of many people who helped me, both directly and indirectly, at various times during its creation. Many friends, colleagues, and critics served at different times as an extended committee, and without their collective contributions this work would never have been completed. First, I want to thank the University of California, including the Office of the President, as well as Graduate Division and the School of Nursing at UCSF for almost continuous financial support during my graduate program. In addition, the Anselm Strauss Fund awarded me the graduate student award, which provided important resources as well. The Department of Social and Behavioral Sciences was also deeply supportive of my work, and the staff was always there to help me survive and flourish. I want to deeply thank the members of my dissertation committee, whose support and understanding through this process gave me a firm base upon which to develop my project. Sharon Kaufman was one of my most important interlocutors, always ready with an incisive and difficult question to push me into uncharted territory. Charis Thompson’s sharp intellect helped to focus my vague notions during my data analysis, and her deep substantive understandings of stem cell research provided continuous inspiration and clarity. Carroll Estes wide knowledge gave me an historical perspective, and I learned everything I need to know about political economy from her. In addition, her generosity and openness, both intellectually and in terms of bottles of wine sustained me during difficult times. The chair of this project, Adele Clarke, served as touchstone during every stage of this difficult process. Her scholarly work served as an exemplar for my own, and she helped me during my most difficult moments, both personally and professionally. I iii consider myself extremely lucky to have had this group of scholars as a dissertation committee. I owe you all a debt I can never repay. No work is completed in private. I have been deeply fortunate to have had interactions with many scholars who have shaped this project in innumerable ways, from conversations and arguments to close readings and copy edits. There are so many colleagues who require thanks: Vincanne Adams, Warwick Anderson, Renee Beard, Chris Bettinger, Brian Dolan, Joseph Dumit, Clay Dumont, Steve Epstein, Jennifer Fishman, Jennifer Fosket, Eli Gerson, Cori Hayden, David Hess, Hannah Landecker, Katrina Karkazis, Nicolas King, Jane Maienschein, Laura Mamo, Donald Moore, Kelly Moore, Virginia Olesen, Howard Pinderhughes, Dorothy Porter, Paul Rabinow, Jason Robert, Janet Shim, Karen Sue Taussig, Elizabeth Watkins, and Joanna Weinberg. I also have had many friends who put up with me and my rantings over the duration of this project. Some of them have also helped me directly through reading groups and conversation partners, as well as paying for beers. While they all deserve recognition, I want to explicitly thank Ruha Benjamin, Johanna Crane, Alan Czaplicki, Chris Dunlap, Stas Feldman, Carrie Friese, Mauro Hernandez, Mike Johnson, Jennifer Liu, Ben Peacock, Maya Ponte, Mike Prohias, Dale Rose, Amy Slonaker, Fouzieyha Towghi, Rachel Washburn, Tracy Weitz, and Greg West. I have had one special friend who has helped me out in countless ways, Cassandra Crawford. I am humbled by her faith in me, and without her patience, dedication and most of all love, I would never have survived this process. Last, I want to thank my family, who always believed in me and my crazy life. My extended family has been a source of love, especially Julie Mirocha and Clay Kunz for iv their neighborly help. My sister Mary and her husband Neil have been generous Chicago hosts. My father John has been the biggest supporter of this project, and has consistently encouraged me to keep moving forward. Finally, I dedicate this project to the memory of my mother, Barbara. Her sharp wisdom and deep engagement with the world was one of my first examples of the importance of inquiry as a form of life. v Regenerating Movements: Human Stem Cells and the Politics of Potentiality Christopher B. Ganchoff Abstract This dissertation was a sociological analysis of Proposition 71, The California Stem Cell Research and Cures Act in 2004. Using the conceptual domains of biomedicalization and science & technology studies, my research examined the emergence of health social movements within the fields of regenerative medicine, as well as the debates around the reification of human biological objects. The narrative arc of this dissertation begins with the drafting of Prop 71, through the initial implementation of the California Institute for Regenerative Medicine, the organization created by Prop 71. This project was animated by two central research questions. First, what are the institutional contexts and processes through which regenerative medicine is becoming a legitimate form of medicine? In my dissertation, I approached this question by examining the lineages of regenerative medicine in the biomedical and biological sciences. Second, what are the on-going, enduring effects of the intersections between controversial sciences and forms of biological citizenship? I developed the concept of “biomedical counterpublics” as a lens to examine the forms of social organization in and around human stem cell research. I conducted participant observation of the Yes on 71 Northern California field campaign, as well as interviews with activists (both in support and in opposition to Prop 71), campaign staff, and bench researchers who worked on behalf of the campaign, and textual analyses of campaign documents. These data revealed the contours of collective identities formed around diseases or conditions that could be ameliorated by stem cell technology, as well as the institutional transformations that have brought biomedical scientists into varied relationships with different publics. This research does not critique regenerative medicine as a new form of instrumental rationality or technological domination or slippery slope. Rather, I argue stem cell research is taking shape both within existing institutional situations, both in terms of research agendas as well as other lines of work, and simultaneously producing new forms of affiliation and political representation.. In this sense, regenerative medicine marks sets of practices and institutions that are productive of new forms of attachment, as well as new modes of exclusion. vi Table of Contents Chapter I: Introduction to the Project 1 The Sociology of Biomedicine 6 Health Social Movements and Stem Cell Activism 9 Scientists as Activists 11 Regenerative Medicine and the Logics of Representation 13 Research Methods, Data Sources, and Data Analysis 16 Participant Observation 18 In-depth Interviews 19 Textual Analyses 20 Overview of the Chapters 21 Chapter II: The History of Stem Cell Research in the USA (and elsewhere), 1945-2001 24 Theoretical Traditions in Human Stem Cell Research 29 The human hematopoeitic system 29 The nuclear blood stream 31 A short history of human bone marrow transplantation 36 The transdifferentiation debates 39 Neural stem cells 43 From rigidity to plasticity 47 Neural grafting 52 The human neural stem cell 55 Developmental biology – Teratocarcinoma research 57 Embryo Cultures: Research Materials and Controversial Biomedical Sciences 58 Presenting the embryo 59 Embryos in/and culture 62 Technologies of the embryo 66 Human Embryos and Stem Cells in a Field of Biotechnology 73 The Politics of Human Research Materials 76 Conclusions 84 Chapter III: Health Social Movements and Scientific Controversies 87 What is a Health Social Movement? 88 Traditions of Health Activism in the USA (and elsewhere) 93 Historical Movements of Popular Health 93 Women’s Health Movement 96 Disease-focused Movements 98 Mental Health Movements 98 Infectious Disease Movements 101 Genetic Disease Movements 104 Environmental Illness Movements 109 Disability Movements 111 Environmental Movements 114 vii Health Social Movements and Human Stem Cell Research 116 Controversial Sciences and Health Social Movements 120 Applying Controversy Models to Biotechnology 126 What are the appropriate research materials for human stem cell research? 128 Who should pay for human stem cell research, and who should monitor and evaluate these investments? 130 What kind of science is human stem cell research? 132 Who owns the objects used and produced by human stem cell research? 135 Who should benefit from stem cell research? Who should bear the costs? How should such questions be evaluated and decided? 138 Conclusions 141 Chapter IV: California and the Politics of Hope: A Sociohistory of Proposition 71 143 The California Context of Biomedical Research 148 Dolly comes to the Golden State 156 The Emergence of Proposition 71 160 CuresNow and Elite Health Activism 160 The California Initiative Process 162 Drafting and Signature Gathering Phases 164 The California Stem Cell Research and Cures Initiative 167 Stem Cells on the Campaign Trail: June – August 2004 173 Opposition to Prop 71 September 2004: It sounds good, but how much will it cost? 176 October 2004: Science and politics