The Double-Edged Helix: Social Implications of Genetics in a Diverse Society (Bioethics) - Softcover

Softcover

ISBN 10: 0801879264 ISBN 13: 9780801879265

Publisher: Johns Hopkins University Press, 2004

Synopsis

Selected as an Outstanding Academic Title for 2003 from Choice Magazine

The Double-Edged Helix explores the impact of recent genetic discoveries on both different population segments and society as a whole. The authors address the medical and ethical implications of the new technologies, outlining potential positive and negative effects of genetic research on minorities, individuals with disabilities, and those of diverse sexual orientations. Presenting a wide array of perspectives, this book emphasizes the need to ensure that research into genetics research does not result in discrimination against people on the basis of their DNA.

About this title

About the Author:

Joseph S. Alper, Ph.D., is a professor in the Department of Chemistry at the University of Massachusetts. Catherine Ard, M.M.H.S., is a doctoral candidate in the Heller School for Social Policy and Management at Brandeis University. Adrienne Asch, Ph.D., is the Henry Luce Professor in Biology, Ethics, and the Politics of Human Reproduction at Wellesley College. Jon Beckwith, Ph.D., is American Cancer Society Research Professor of Microbiology and Molecular Genetics at Harvard Medical School. Peter Conrad, Ph.D., is the Harry Coplan Professor of Social Sciences at Brandeis University. Lisa N. Geller, Ph.D., J.D., is an associate at Fish and Richardson, P.C., in Boston.

From The New England Journal of Medicine:

The Double-Edged Helix takes a cautious look at the effects of genetic discoveries on society. It warns that neither society nor genetics is governed by simple cause-and-effect mechanisms and that this complexity creates potential for both benefit and harm. The reader is reminded that social inequality has been justified, maintained, and promoted by ugly misapplications of science. Most of the 20 contributors have specialties outside of genetics, and none are prominent in the field of human genetics. This might account for the fact that the 13 chapters draw only superficially on the literature in human genetics. It might also explain the heavy reliance on a few examples. Several chapters repudiate Dean Hamer's study of homosexuality. Daniel Kevles's history of eugenics (In the Name of Eugenics. Berkeley: University of California Press, 1985) is praised in several chapters. Curiously, the authors neglect to inform their readers that Kevles found that many geneticists abandoned eugenics as it became incompatible with their science. Reductionism and deterministic biologic theories are among the book's targets, but it does not provide a good framework for understanding complex interactions. This task is not beyond the scope of a book for nonspecialists. The popular writings of J.B.S. Haldane from the early 20th century manage it with clarity and wit. The Double-Edged Helix correctly identifies complex interactions as a likely reason that contributions of specific genes underlying schizophrenia have yet to be confirmed. It is disappointing that the book overlooks the parallel failure to identify manipulable environmental determinants of schizophrenia and the harm that has been caused by spurious environmental explanations such as schizophrenigenic mothers. The treatment of genetic diversity, race, and ethnic background ignores decades of literature in the biologic and social sciences in failing to provide rigorous definitions of race and even racism. The authors argue that genetic diversity should not be studied, because the value of such studies is limited relative to the risk of their misuse by racists. However, the failure to recognize genetic differences also has consequences -- for example, the boondoggle caused by forcing milk products on regions of the world with a high incidence of lactose intolerance. Geneticists studying differences among populations are urged to become more active in countering racist claims. This is good advice for everybody to follow. A major strength of this book is its recognition that our society encompasses persons and groups with diverse interests. These interests do not always run in parallel, and a benefit for one sector may be a drawback for another. Genetic testing for Tay-Sachs disease has been helpful for Ashkenazi Jews, whereas a similar program of genetic testing for sickle cell anemia in black Americans was disastrous. A serious disconnection between the goals of genetic researchers and the challenges faced by those with genetic disorders is demonstrated in the chapter on advocacy groups. The issues raised by this book are valid, and all scientists should be aware of them. I often found myself nodding in agreement while reading The Double-Edged Helix, but I became dissatisfied as I gave the topics more thought. Still, the book presents an outsider's view that has a funny effect somewhat like that of seeing your reflection in a department-store window: it is fuzzy and inaccurate, but it captures some truths that you would rather not see. Jeffrey C. Long, Ph.D.
Copyright © 2003 Massachusetts Medical Society. All rights reserved. The New England Journal of Medicine is a registered trademark of the MMS.

About this edition

• Publisher: Johns Hopkins University Press
• Publication date: 2004
• ISBN 10: 0801879264
• ISBN 13: 9780801879265
• Binding: Paperback
• Number of pages: 312
• Editor: Alper Joseph S., Ard Catherine, Asch Adrienne, Beckwith Jon