A HISTORY OF GENETIC COUNSELING IN THE UNITED STATES INTERPRETING THE GENETIC REVOLUTION: A HISTORY OF GENETIC COUNSELING IN THE UNITED STATES, 1930-2000. By DEVON STILLWELL, Hon. B.A., M.A. A Thesis Submitted to the School of Graduate Studies in Partial Fulfilment of the Requirements for the Doctorate of Philosophy McMaster University © Copyright by Devon Stillwell, August 2013 2 McMaster University DOCTORATE OF PHILOSOPHY (2013) Hamilton, Ontario (History) TITLE: Interpreting the Genetic Revolution: A History of Genetic Counseling in the United States, 1930-2000 AUTHOR: Devon Stillwell, Hon. B.A., M.A. (McMaster University) SUPERVISOR: Dr. Karen Balcom NUMBER OF PAGES: x, 350. ii Abstract This dissertation explores the social history of genetic counseling in the United States between 1930 and 2000. I situate genetic counselors at the interstices of medicine, science, and an increasingly “geneticized” American society. My study emphasizes two central themes in the history of genetic counseling. First, genetic counselors have played a crucial role in bridging the “old eugenics” and the “new genetics” (both temporally and ideologically) as mediators of genetic reproductive technologies. Genetic counselors have negotiated the rights and responsibilities of genetic citizens in their personal patient encounters. Discourses of privilege and duty were also extrapolated outward to public debates about the new genetics, demonstrating the highly-politicized contexts in which counselors practice and women make reproductive choices. Second, I interrogate the professionalization process of genetic counseling from a field led by male physician-geneticists in the 1940s and 50s, to a profession dominated by women with Masters degrees by the 1980s and 90s. This transformation is best understood through the framework of a “system of professions,” and counselors’ professional position between “sympathy and science.” These frameworks similarly structured the client-counselor relationship, which also centered on concepts of risk, the promotion of patient autonomy, and the ethics of non-directiveness and client-centeredness. These principles distanced iii counselors from their field’s eugenic origins and the traditional doctor-patient relationship. I emphasize the voices of genetic counselors based on 25 oral history interviews, and hierarchies of gender, race, and educational status at work in the profession’s history. A study of genetic counseling elucidates the social impact of genetics and reproductive technologies in the twentieth-century United States. In so doing, it is an important contribution to the histories of health and medicine, medical sociology, bioethics, disability studies, and gender and women’s studies. iv Acknowledgements I am thankful to so many people for their guidance and support during my five years at McMaster University. First and foremost, I want to thank my supervisor Dr. Karen Balcom. I have learned so much from you and cannot overemphasize how much I appreciate your support and encouragement. I have also benefitted tremendously from the expertise and advice of my dissertation committee members, Dr. David Wright and Dr. Juanita De Barros, as well as my external examiner Dr. Catherine Carstairs. Thank you for all your incredibly thoughtful comments and suggestions. Thank you to everyone in the Lakehead University History Department who encouraged me to undertake the PhD including Dr. Patricia Jasen, Dr. Bruce Strang, Dr. Jane Nicholas, Dr. Kristin Burnett, and Dr. Ronald Harpelle. Thank you to everyone in the McMaster History Department who helped me think through various aspects of my doctoral project, especially Dr. John Weaver and Dr. Nancy Bouchier. My project and scholarly development have also been influenced by all involved in the Gender Studies and Feminist Research program, particularly Dr. Melinda Gough and Dr. Elisabeth Gedge. A big thank you to Karen Szala-Meneok and the McMaster Research Ethics Office for their help with my oral history project. And a super special thank you to Debbie Lobban and Wendy Benedetti for your help with basically everything. I owe so much of my knowledge of genetic counseling to the counselors who shared their experiences with me. Thank you for making me privy to your v professional but also personal lives and experiences. I am especially indebted to the National Society of Genetic Counselors for providing me with access to their newsletters and helping with the interviewee recruitment process. I could not have conducted the research for this project without the help of library and archives staff including (but not limited to) Loma Karklins at the California Institute of Technology archives; Erin George at the University of Minnesota archives; Matthew Turi at the University of North Carolina Chapel Hill archives and Dr. Fitz Brundage for sponsoring my stay; David Rose at the March of Dimes National Foundation; Cindy Pearson at the National Women’s Health Network; and John Rees at the National Library of Medicine. Thank you to everyone who commented on my study at conferences, colloquia, or workshops including the Ohio Humanities Council Oral History Institute Workshop at Kenyon College (Spring 2010); the York University New Frontiers History Graduate Conference (2010); the Canadian Society for the History of Medicine Conference (2010, 2012); the McMaster History Department Thursday Colloquium Series (Winter 2012); and the GSFR Symposium (Winter 2012). A special thank you to Dr. Kristin Burnett, Dr. Jayne Elliott, and Dr. Cynthia Toman, who provided feedback on an article drawn from material appearing in chapters 2, 3, and 5 of my dissertation at the Beyond Storytelling: Understanding Society through Encounters in the History of Health workshop at the University of Ottawa (Spring 2011). vi This research was supported by a Social Sciences and Humanities Research Council Doctoral Award (2010-2012), and two Ontario Graduate Scholarships (2009-2010, 2012-2013). My research has also been graciously funded by several McMaster University Graduate Scholarships, the Richard Fuller Memorial Award, the Edna and Ross Reeves Travel Scholarship, and the Yates Travel Fund. Finally, thank you so much to my wonderful family especially my mom for her unwavering support and encouragement, and my dad for instilling in me a love of history. Thanks to my fellow McMaster graduate students who always made sure to mix work with an appropriate amount of fun. And Luke, thank you for your patience, your medical insight, and your confidence in me. vii Table of Contents Abstract .......................................................................................................................... iii Acknowledgements ......................................................................................................... v List of Abbreviations ...................................................................................................... ix Introduction: On the Genetic Frontier: Genetic Counseling in the Twentieth- Century United States. .............................................................................................. 1 Chapter 1: “To Guarantee That Children Will Be Well Born”: Eugenics, Genetics, and Genetic Counseling, 1930-1980. ....................................................................... 37 Chapter 2: “A Nice Comfort Zone for Women”: The Professionalization and “Feminization” of Genetic Counseling, 1947-1979. ................................................ 95 Chapter 3: The Drive to “Design Our Own World”: The Organizational and Institutional Professionalization of Genetic Counselors, 1979-2000. ..................... 124 Chapter 4: To Listen, Educate, Support, and Counsel: The Client-Counselor Relationship, 1947-2000. ...................................................................................... 163 Chapter 5: Debating the New Genetics: Reproductive Rights, Disability Advocacy, and the Rights and Responsibilities of Genetic Citizens, 1960-2000. ..................... 218 Chapter 6: Lost in Transcription: Debating Genethics at The Hastings Center and in the American Print Media, 1960-2000. .............................................................. 268 Conclusion: Our Genetic Past, Present, and Future. ..................................................... 310 Appendices .................................................................................................................. 322 Bibliography ................................................................................................................ 326 viii List of Abbreviations ABGC – American Board of Genetic Counseling ABMG – American Board of Medical Genetics ABMS – American Board of Medical Specialties AES – American Eugenics Society AFP – alpha-fetoprotein AIFR – American Institute of Family Relations AMA – advanced maternal age ASHG – American Society of Human Genetics BAC – Bioethics Advisory Committee CF – cystic fibrosis CGC – Certified Genetic Counselor CVS – chorionic villus sampling DI – The Dight Institute for Human Genetics DNA – deoxyribonucleic acid ERO – Eugenics Record Office FINRRAGE – Feminist International Network of Resistance to Reproductive and Genetic Engineering. HBF – Human Betterment Foundation HBL – Human Betterment League HC – The Hastings Center IVF – in vitro fertilization. ix MHS – Minnesota Historical Society MOD – March of Dimes NARAL – NARAL Pro-Choice America, formerly National Association for the Repeal of Abortion Laws, The National Abortion Rights Action