The Gene Wars: Science, Politics, and the Human Genome

A look at the controversial Human Genome Project recounts the struggle to launch the multi-billion-dollar, ten- to twenty-year project and relies on primary documents gathered as events unfolded to unravel the tangled scientific and political threads of the story.

The Human Genome Project, the most ambitious biological research program ever undertaken, was born in controversy. Heralded by its more enthusiastic proponents as a quest for the "Holy Grail of biology"―and the key, ultimately, to the treatment of a variety of hereditary diseases―it has as its initial goal the mapping of all the genes in the entire three-billion-letter genetic code embodied in the DNA of a typical human cell. A major factor in the counterarguments of its opponents: its projected cost, estimated to run into the billions of dollars, spread over 10-20 years.

In this firsthand account of the protracted struggle to launch the genome project, a close observer of that process―and sometime participant in it―unravels the tangled scientific and political threads of the story, relying on primary documents gathered even as events unfolded, supplemented by interviews with all the main actors―including the controversial first head of the National Institute James D. Watson. The result is an absorbing case study in the politics on a project with far-reaching medical and social implications.

Robert Cook-Deegan became Director of the IGSP's Center for Genome Ethics, Law & Policy in July 2002. He was previously director of the Robert Wood Johnson Foundation Health Policy Fellowship program (2000-2002) at the Institute of Medicine (IOM), National Academy of Sciences, a Robert Wood Johnson Health Policy Investigator at Georgetown University (1999-2002), and a seminar leader at Stanford-in-Washington (1996-2003). He worked at The National Academies in various capacities from 1991 until coming to Duke.

He is the author of The Gene Wars: Science, Politics, and the Human Genome (New York: Norton, 1994; paperback 1996; tr. Korean 1995, Japanese 1996) and an author on over 200 articles.

Dr. Cook-Deegan was a member of the Board of Directors, Physicians for Human Rights, 1988-1996, with whom he participated in human rights missions to Turkey, Iraq and Panama.

In 1996, Dr. Cook-Deegan was a Cecil and Ida Green Fellow at the University of Texas, Dallas, following his work for the report Allocating Federal Funds for Science and Technology (the "Press Report"). From 1991-4, he directed IOM' s Division of Biobehavioral Sciences and Mental Disorders. He worked for the National Center for Human Genome Research 1989-90, after serving Acting Executive Director of the Biomedical Ethics Advisory Committee of the U.S. Congress 1988-9. Dr. Cook-Deegan was a AAAS Congressional Science & Engineering Fellow 1982-3 and spent six years at the congressional Office of Technology Assessment. This followed two years of postdoctoral research on the molecular biology of oncogenes with Lasker Award scientist Raymond L. Erikson, after completing his internship in pathology at the University of Colorado. He received his MD degree from the University of Colorado in 1979 and his bachelor' s degree in chemistry, magna cum laude, in 1975 from Harvard College. He grew up in Denver.