Environmental estrogens and vulnerable bodies: A sociological analysis of activist-initiated collaborative research by Laura Katherine Thomson DISSERTATION Submitted in partial satisfaction of the requirements for the degree of DOCTOR OF PHILOSOPHY in Sociology in the Copyright 2010 by Laura Katherine Thomson ii Acknowledgments Foremost, I am extremely grateful for my dissertation committee and have benefited greatly from their active interest in my research, as well as their mentorship. I was introduced to their work early on in my graduate research and as my dissertation demonstrates, their work continues to influence mine. Susan Bell’s research on HRT, diethylstilbestrol (DES), and collaborative science informs much of this dissertation, as does Janet Shim’s research on epidemiology and constructions of risk. Adele Clarke’s feminist research and writings on women’s health have influenced my own, and her accounts of reproductive endocrinology and methodological contribution of Situational Analysis have guided research from the onset. My committee also provided helpful advice on how to approach the dissertation, such as Susan’s suggestion to write every day and simplify my teaching responsibilities, “at least for this year.” Janet recommended I always prioritize the dissertation, take Sundays off, and not let anxieties about the future hold me back. Adele, my Chair and mentor, has guided and advocated for me each step of the way. She suggested starting each day of writing on a “downward slope,” and most importantly, to be patient with the process and time it takes to find one’s voice. I am very fortunate for the scholarly and professional direction she has provided, and her support in all its many forms. I thank everyone who works for the Department of Social & Behavioral Sciences at UCSF. I am indebted to Ruth Malone for so much help, patience, instruction, and care to ensure sure I made it through my early years in graduate school while gaining valuable skills as a researcher. During the four years I worked as a research assistant on her LGBT iii tobacco content analysis research project with Libby Smith, Naphtali Offen, and Guadalupe Salazar, I became adept at qualitative content analysis research. I wish to thank all UCSF Sociology students whose paths have crossed my own, beginning with my cohort: Brian Grossman, Signy Judd, and Jennifer Harrington. I received help and encouragement from my dissertation writing group, with students: Rachel Washburn, Nicole Wolfe, Erica Solway, Suepattra May, Benjamin Hickler, and Robin Higashi. I extend a huge thank-you to Sharon Kaufman for her teaching and guidance. The sociology department at the University of San Francisco along with hundreds of students have supported and inspired me since 2005, as has the University’s ethic of service and dedication to undergraduate education. I gratefully acknowledge the School of Nursing and Graduate Divison at UCSF and for funding from the following sources: Century Club Award, Earl C. Anthony Scholarship, UCSF Graduate Dean’s Health Science Fellowship, Regents Fellowship, and Andrews Scholarship. I also wish to thank the unexpected and much appreciated help from the Wendy and Morton Kirsch General Student Support funds. This dissertation is built from research conducted by many talented sociologists, anthropologists, and historians, and I wish to acknowledge everyone whose words and work I have cited. In addition to the research of my committee members, I was richly informed and inspired by Maren Klawiter, Jennie Reardon, Sheldon Krimsky, and Crista DeLuzio. And I thank all my interviewees from the Breast Cancer Environmental Research Centers, especially Bob Hiatt, Larry Kushi, and Janice Barlow. They have been iv cooperative, helpful, insightful, and trusting, and I very much admire their dedication to breast cancer research and advocacy. My friends have provided me with the most day-to-day support: Kat Delse, Eric Chin, April Topfer, Brandon Vance, Jim Cody, Laura Detmer, Edward West, Rob Schwartz, Tim Kuenster, Sam Crumley, Dan Klowden, Gary Skye, Jennifer Randles, Karin Jones, June Park, Isla McKetta, Carrie Friese, and Guadalupe Salazar. I also want to thank mentors: Mark Sexton, Kevin Barrows, and Eugene Cash. Most of all, I want to emphasize gratitude and love for my family. My father and step-mother housed me in Arizona for two months while I drafted chapters, and both have talked me through difficult times and celebrated victories along the way. My sisters Leslie and Amy and brothers Paul and Ray have been kind, patient, giving, and repeatedly let me know they were proud of me. My family has experienced tremendous pain and heartache during the years I have been in graduate school. My mother, father, sister, and brother have each suffered from cancer over that past 15 years, and my mother and brother died at young ages as a consequence. I write this dissertation for them and in acknowledgment of the need for universal health care that is socially responsible and responsive and prioritizes preventive care. v Abstract This dissertation analyzes the current era of activist-scientist collaborations on environmental causes of breast cancer. The guiding questions are: As women’s health organizations in the U.S. are becoming institutionalized within biomedical research, how are these alignments shaping knowledge on women’s health? What bearing do the collaborations and products of research have on activist/ advocacy organizations? The primary site of data collection was the Breast Cancer and the Environment Research Centers (BCERC). Beginning in 2003, BCERC is studying how environmental exposures might cause early pubertal onset in girls and breast cancer. It is one of the most collaborative research projects funded by the NIH to date. My data consisted of 22 in-depth interviews with researchers and advocates, observations at conferences and meetings, and a content analysis of 54 newspaper articles from 2005-2008 discussing toxins, early puberty, and breast cancer. Peer-reviewed medical journals and breast cancer advocacy websites supplemented my data. This dissertation is informed by grounded theory and social worlds methodologies, and by situational analysis. I engage biomedicalization, feminist science studies theories, and health social movements, including the growing body of literature on public understandings of science. I observed that the research being produced by scientists and activists is painstaking, slow, and difficult to interpret. As a consequence, the collaborations themselves are being discussed as major contributions, for they can be analyzed and discussed by researchers and advocates as they unfold. My content analysis data highlighted implicit lines of discussion among scientists, advocates, and popular vi newspapers. Scientists portrayed journalists as popularizing issues without adequately conveying results, and journalists criticized scientists for not providing enough information on avoiding exposures. The content analysis emphasized difficulties in distinguishing inside/outside boundaries in science. The central story of this dissertation follows the advocates as they renegotiate boundaries of expertise and claim recognition as scientific researchers in their own right. As Callon (1999) has argued, when advocacy groups push for and claim roles in shaping research, their collective identities strongly influence the knowledge that becomes co- produced. With the rise of cooperative formats of breast cancer research, new boundaries are being drawn around “what counts” as science. vii TABLE OF CONTENTS Page CHAPTERS 1. INTRODUCTION ………………………………………… ……………... 1 Women’s Health Research and Hormonal Bodies ……………………….... 6 Theoretical Approaches ………………………………………………….... 10 Research Methods…………...……………………………………………. 16 Data Collection and Analysis ……………………………………………... 17 Overview of Chapters .………………………………...………………….. 21 2. WOMEN’S HEALTH ACTIVISM AND HORMONES: FROM DES TO EDC’S……………………………………………………. 29 The Potency of Sex Hormones:.………………………………………….... 32 Women’s Health Activism and Hormones ……..…………………………. 38 The Women’s Health Initiative …………………………...……………….. 39 Breast Cancer Activism …………………………………………………… 55 The Endocrine Disrupting Hypothesis...…………………………………… 62 Early Puberty and Breast Cancer Risk: BCERC ………………………….. 68 Conclusions ………………………………………………………………... 69 3. PUBLIC CONFIGURATIONS …………………………………………… 73 Situating the BCERC ……………………………………………………… 76 Collaboration as the Object of Study ……………………………………… 90 Advocates, Activists, and Community………………………………........... 81 Implicated Actors …………………………………………........................ 95 The Advocate/Activist Distinction ………………………………………... 100 Conclusions …………………………………...…………………………… 109 viii 4. MANAGING UNCERTAINTY AND CREATING “WINDOWS OF VULNERABILITY” ………………...…….………………………………114 Changes in Epidemiology …………………………………………………. 121 Disparities in Breast Cancer ………………………………………...…….. 125 Puberty in Western Thought …………………………………..…………... 129 Is Synthesis Possible? ……………………………………………………... 137 Managing Uncertainty Front Stage and Back Stage……………………….. 142 Conclusions ……………………………………………………………….. 152 5. A DANGEROUS AGE …………………………………...………………. 156 The Lowering Age of Puberty in Girls ……………………………………. 162 Press Coverage: Early Puberty is Contested and Complex………………... 165 Press Coverage: Early Puberty is a Moral and Social Problem ……............ 168 Interviews with BCERC Members……………………………………….... 178 Conclusions ………….……………………………………………………. 183 6. CONCLUSION ……………………………………………………………. 187 A Summary