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Genetic Discrimination: Genealogy of an American Problem

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Genetic Discrimination: Genealogy of an American Problem Genetic Discrimination: Genealogy of an American Problem Janet Elizabeth Childerhose Department of Anthropology McGill University, Montreal November 2008 A thesis submitted to McGill University in partial fulfillment of the requirements of the degree of Doctor of Philosophy © Janet Elizabeth Childerhose 2008 ABSTRACT Genetic discrimination has been transformed from an isolated concern of a handful of professionals into a pressing civil rights and public policy problem in the United States over the last twenty years. My dissertation is a genealogical account of how genetic discrimination has been shaped into a problem of this stature. It answers two questions: Where did the problem come from? How has the problem changed over time? In Part One, I trace the history of concerns about discrimination from the 1970s to the present. Drawing from oral histories with key actors and organizations that shaped early public understanding of the problem, I show that concerns about genetic discrimination originated in diverse practices. These practices include workplace genetic screening, insurer discrimination against individuals with AIDS, the rapid commercialization of genetic tests in the 1980s, and health care reform. In Part Two, I present findings from a three-year ethnographic study of public policy hearings on genomic medicine in the United States that illustrate how new actors have been defining the problem of genetic discrimination since 1995. The hearings of the Secretary’s Advisory Committee on Genetics, Health and Society were a site where participants legitimized genetic discrimination as a civil rights problem and developed lobbying tools to persuade Congress to pass federal nondiscrimination legislation. Participants framed fear of discrimination as a barrier to the nation’s scientific progress and a significant threat to the lives of Americans. I use the construct of genomic citizenship to draw out claims about the rights and duties of Americans in contemporary discourse on genetic discrimination. Passing federal nondiscrimination legislation is one way in which the civil rights of Americans appear to be expanding, while their responsibilities to act genetically are increasing. Advocates of nondiscrimination legislation, who use the language of genetic defect to argue that everyone is vulnerable to discrimination, geneticize all Americans by enrolling them into the biosociality of the flawed, transparent genome, with attendant duties. What these advocates do not also champion is the right of Americans to refuse to think or act genetically. RÉSUMÉ La discrimination génétique est passée du statut de préoccupation isolée parmi un petit nombre de professionnels à celui d’un urgent problème de droits civils et de politique publique aux État-Unis, depuis les vingt dernières années. Ma thèse est un compte rendu généalogique de la transformation de la discrimination génétique en un problème d’une telle envergure. Elle répond à deux questions : Quelle est l’origine du problème? Comment le problème a-t-il changé avec les années? Dans la première partie, je retrace l’histoire des préoccupations au sujet de la discrimination, des années 70 à aujourd’hui. Je puise dans la tradition orale chez des acteurs clés et des organismes de premier plan qui ont informé la compréhension initiale du problème par le public. Je montre comment les préoccupations entourant la discrimination génétique sont issues de différentes pratiques. Dans la deuxième partie, je présente les résultats d’une étude ethnographique d’une durée de trois ans, traitant des audiences publiques sur la médecine génomique aux États-Unis, et illustrant comment de nouveaux acteurs ont défini le problème de la discrimination génétique depuis 1995. Dans le cadre des audiences du Secretary’s Advisory Committee on Genetics, Health and Society, les participants ont identifié la peur de la discrimination comme un obstacle au progrès scientifique de la nation, de même qu’une menace significative pour la vie des Américains et des Américaines. J’ai recours à la construction de citoyenneté génomique dans le but de dégager des revendications au sujet des droits et devoirs des Américains et des Américaines, en rapport avec le discours actuel sur la discrimination génétique. L’adoption d’une législation de non discrimination semble contribuer à l’élargissement des droits civils des Américains et des Américaines, tandis que s’accroît leur responsabilité d’agir sur le plan génétique. Les défenseurs de la législation de non discrimination emploient le langage des défaut génétiques pour soutenir que toute la population est sujette à la discrimination. Selon ces mêmes défenseurs, les Américains et Américaines n’ont pas le droit de refuser de penser ou d’agir en termes génétiques. TABLE OF CONTENTS Acknowledgements i List of Abbreviations v INTRODUCTION Chapter 1. Introduction 2 Chapter 2. Finding the Problem 25 Chapter 3. Situating the Problem 58 PART ONE: ROOTS OF CONCERN Chapter 4. Entry Points and Early Warnings (1970 – 1992) 109 Chapter 5. Naming and Framing the Problem (1992 – 2003) 156 PART TWO: BUILDING A GENOMIC NATION Chapter 6. Genomics Meets the U.S. Health Care System 207 Chapter 7. Legitimizing the Problem: Genetic Discrimination 246 at the SACGHS Hearings (2003 – 2005) Chapter 8. Voices of Discrimination at the SACGHS Hearings 295 (2003-2005) Chapter 9. Genomic Citizenship 335 CONCLUSION Chapter 10. Conclusion 369 APPENDIX A. DATA COLLECTION AND ANALYSIS 388 APPENDIX B. SUMMARY OF H.R. 493 395 APPENDIX C. PREAMBLE, H.R. 493 401 APPENDIX D. SACGHS CHARTER, 2004 405 APPENDIX E. SACGHS ROSTER, 2005 410 APPENDIX F. SACGHS CALL FOR PUBLIC COMMENTARY 414 REFERENCES CITED 416 ACKNOWLEDGEMENTS The support and encouragement of many has made this dissertation possible. My supervisor, Margaret Lock, guided me through a long voyage with great care and dedication, and always with a vision of what medical anthropology can do. It is a remarkable person who continues to supervise—and champion—a student long after retirement. I am grateful for her patience, unfaltering guidance, and support. I cannot thank her enough for her enthusiasm for my project, and for her commitment to seeing me to the end. My two committee members have shaped this dissertation in many ways. In his comments to me and in his own teaching, Allan Young has taught me to practice discipline and care in my reasoning. His voice and judicious critiques have stayed with me, and I have tried to apply them to my writing and editing. I am fortunate that Nicole Couture agreed to serve on my committee. She brought a theoretical grounding and breadth to my work, and an eye for detail. She was generous with her time and her comments, and I was delighted to work with her. Jennifer Fishman and Kathleen Glass of the Biomedical Ethics Unit at McGill served as Internal and External committee members. In so doing, they gave generously of their time and their comments. Jennifer pushed me to think beyond my conclusions, and has supported me beyond the dissertation. I want to acknowledge the two chairs of the Department of Anthropology at McGill, Michael Bisson and John Galaty, who have supported their students in all matters, big and small. I give thanks also to the faculty in the Department of Anthropology, particularly to Sandra Hyde for her collegiality and advice, Carmen Lambert, who recognized the value of oral histories to my project, and Philip Carl Salzman, who gave me excellent advice early in my degree on how not to write a grant proposal. Many McGill University staff helped with this dissertation. Cynthia Romanyk, Rose Marie Stano, and Diane Mann in the Department of Anthropology manage the administration of faculty and students with the greatest professionalism and care. For ten years, they answered every question and steered me in the right direction. I am likewise grateful to Adele Tarantino and Heike Faerber in the Department of Social Studies of Medicine for their tireless support. I would also like to thank the staff at i the Interlibrary Loans Office at the McLennan-Redpath Library, Research Ethics Officer Lynda McNeil for demystifying the REB process, and Grants Administrator Vera Milbradt for providing accounting support. Kristina Kotoulas in Graduate and Postdoctoral Studies was extremely supportive and encouraging, and always kept me informed, as did C. Dean Barnes. It was Abby Lippman, in McGill’s Department of Epidemiology, who first suggested that I should include a chapter on the history of genetic discrimination in the United States. She not only proposed names of people to interview, she eased the way by endorsing my research to them. Her comments and recollections on the history of genetic screening and testing were invaluable to me in mapping out this research project. The seven people who agreed to be interviewed for this dissertation and describe their roles in shaping public understanding of genetic discrimination were generous with their time and insights. They also challenged my assumptions and thinking in important ways. Often, it was a comment made during an interview that forced me to revise my arguments and head off in a different direction. To Jonathan Beckwith, Phil Bereano, Paul Billings, Troy Duster, Neil Holtzman, Sheldon Krimsky, and Amanda Sarata: thank you for sharing your experiences and opinions with me. I hope that I have done justice to them. I also owe a debt to the dozens of people who spoke to me during my fieldwork at the SACGHS hearings, my research on the direct-to-consumer testing industry, and at organizations such as the Genetics and Public Policy Center in Washington, DC, and the Kaiser Family Foundation in California. Their comments and insights closed gaps in my knowledge about the U.S. health care system and the regulatory environment of genetic testing, while stimulating my thinking about what makes genetic discrimination an American problem. The staff at the NIH Office of Biotechnology Activities provided invaluable support for my research. Sarah Carr, Suzanne Goodwin, Yvette Seger, and other members of the OBA patiently answered my questions about FACA legislation and the workings of the Committee, and sent transcripts of the SACGT and SACGHS hearings to me.
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