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

Robert Cook-Deegan

Softcover

ISBN 10: 0393313999 ISBN 13: 9780393313994

Publisher: W. W. Norton & Company, 1996

Synopsis

“Probably the most authoritative account of the genesis and early stages of the Human Genome Project. . . . This book tells it the way it was―and is.” ―Victor A. McKusick, University Professor of Medical Genetics, Johns Hopkins University

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 Institutes of Health genome effort, Nobel laureate James D. Watson. The result is an absorbing case study in the politics of modern science - focused in this case on a project with far-reaching medical and social implications.

About this title

About the Author:

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.

From Kirkus Reviews:

An insider's detailed look at the politics of Big Science, in this case the multibillion-dollar project to map all the genes in human DNA. In 1986-88, Cook-Deegan directed a team at the Office of Technology Assessment advising Congress on the human genome project, and later he headed a bioethics committee concerned with its policy implications. From this vantage point he relates how what began as a technological vision has been shaped by powerful political forces. Initially, he describes the scientific ideas and the technology that gave the project its impetus, moving on to track the bureaucratic involvement that began in 1985 when the Department of Energy, interested in genetic effects of exposure to the atomic bomb, proposed sequencing the human genome. Seen as a way to capitalize on the resources offered by the national laboratories--access to high technology, superconductors, and a multidisciplinary team of scientists--the project encountered resistance from the biomedical research community. The National Institutes of Health asserted its claim to a redefined human genome project the following year, and soon Congressional hearings were in full swing. Eventually, through what Cook-Deegan describes as a ``Byzantine process of negotiation and politics,'' an accommodation was reached calling for DOE-NIH collaboration. Next, Cook-Deegan sketchily describes the efforts of other nations, especially Japan, to start similar projects, and then considers some of the ethical, legal, and social issues raised by genetic research--a topic much too complex to be covered adequately in a few chapters. An enormous amount of well-documented research that overwhelms in its detail yet fails to provide a clear and concise picture of either the science or the politics; still, it's certain to be a valuable resource for future analysts writing from a greater perspective. -- Copyright ©1994, Kirkus Associates, LP. All rights reserved.

About this edition

• Publisher: W. W. Norton & Company
• Publication date: 1996
• ISBN 10: 0393313999
• ISBN 13: 9780393313994
• Binding: Paperback
• Number of pages: 416