NHGRI's Oral History Collection: Interview with Robert Cook-Deegan

Robert Cook-Deegan, M.D. is a professor in the School for the Future of Innovation in Society, and with the Consortium for Science, Policy and Outcomes at Arizona State University. His research interests include science policy, health policy, biomedical research, cancer, and intellectual property. He is the author of The Gene Wars: Science, Politics, and the Human Genome. In this oral history, Robert describes his involvement with the Human Genome Project (HGP) while employed by the congressional Office of Technology Assessment and the National Center for Human Genome Research. As a participant in discussions about whether to sequence the human genome, and subsequently working with Jim Watson, his oral history offers an important and insightful perspective on the HGP.

Credits:
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Executive Producer/Interviewer/Historian: Christopher Donohue, Ph.D.
Assistant Producers: Kris Wetterstrand, M.S., Mukul Nerurkar
Producer/Videographer/Editor: Alvaro Encinas
Voiceover (Interview Questions): Zachary Utz, M.A.

[genometv]

1:07 - What experiences early in life influenced your future professional and scientific career?
2:20 - What was your undergraduate experience like?
5:46 - How did you end up in Raymond Erikson’s lab for your post-doctoral research?
9:16 - Can you describe the research you did during your post-doc?
11:23 - How did this virus research relate to the future of cancer research?
14:18 - How important was the ongoing study of these retroviruses to our understanding of HIV/AIDS?
16:37 - After your post-doc, how did you end up at the Office of Technology Assessment (OTA)?
19:29 - What was the OTA’s legacy and what kinds of work did the OTA do?
23:43 - When did the idea of the Human Genome Project (HGP) arise and how did the OTA become involved?
28:15 - What recommendations were made regarding who should lead the HGP?
30:35 - Where did the initial HGP budget come from? What was Jim Wyngaarden’s role?
33:35 - How was the decision made that the NIH should lead the HGP?
38:58 - How did the OTA and NRC reports influence the establishment of the HGP?
41:26 - Did you think there was too much hype around the HGP at the beginning?
43:36 - How did you come to work at the National Center for Human Genome Research (NCHGR)?
47:23 - What was the kind of work you did for NCHGR?
52:10 - How did the structure of NIH influence the management of the HGP?
56:16 - What were the origins of the NHGRI Ethical, Legal and Social Implications (ELSI) program?
1:03:24 - What are your thoughts about bioethics being seen as a field that emphasizes worst case scenarios?
1:06:26 - Is bioethics a discipline? How does ELSI fit in to this picture?
1:08:54 - Can you talk about early ELSI program staff members, Eric Juengst and Elizabeth Thomson?
1:11:30 - How does testing for cystic fibrosis relate to the origin of the ELSI program?
1:13:59 - How does insurance discrimination relate to the origin of the ELSI program?