Genetic Secrets


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Protecting Privacy and Confidentiality in the Genetic Era

Edited by Mark A. Rothstein; Foreword by Arthur C. Upton

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The dramatic explosion of information brought about by recent advances in genetic research brings welcome scientific knowledge. Yet this new knowledge also raises complex and troubling issues concerning privacy and confidentiality. This thought-provoking book is the first comprehensive exploration of these ethical, legal, and social issues. Distinguished experts in law, medicine, bioethics, public health, science policy, clinical genetics, philosophy, and other fields consider the many contexts in which issues of genetic privacy arise—from research and clinical settings to workplaces, insurance offices, schools, and the courts.

The first chapters of this book set out a framework for analyzing genetic privacy and confidentiality, comparing genetic privacy with other forms of medical privacy. Later chapters deal with such topics as concerns that arise in the health care setting (the patient-physician relationship, genetic counseling and privacy); the effect of new technology (the role of commercial genomics, forensic DNA applications); nonmedical uses of genetic information (the law of medical and genetic privacy in the workplace, implications of genetic testing for health and life insurance); and a review of ethics and law in the United States and abroad. In the concluding chapter, Mark A. Rothstein discusses flaws in existing and proposed legislation designed to protect genetic privacy and confidentiality, and he offers a new set of guidelines for policy makers.

Mark A. Rothstein is Hugh Roy and Lillie Cranz Cullen Distinguished Professor of Law and director of the Health Law and Policy Institute at the University of Houston.

"This wide-ranging collection deals with the issues that arise from our rapidly expanding genetic knowledge—issues that are important today and are likely to grow more important."—John A. Robertson

"A multidisciplinary collection of thorough, thoughtful analyses of the privacy and related public policy dilemmas posted by advances in genetic science. This book is an impressive resource in a critically important field."—Eugene Oscapella

"An impressive compendium from the leaders of the many aspects of genetic research which should be indispensable for anyone trying to come to grips with the many difficult issues which genetic research raises."—Robert Bazell, Chief Science Correspondent, NBC News

"The volume, Genetic Secrets, edited by Mark Rothstein, provides a comprehensive overview of privacy issues raised by the use of genetic technologies in many spheres of our lives."—Bioethics

"Genetic Secrets is an excellent resource for anyone interested in legal concerns related to genetic privacy."—JAMA

"This is a very important and timely book to be read by pediatricians, pediatric endocrinologist, geneticists and general practitioners. At a time when new techniques of molecular biology disclose the secrets of heredity, the physician is confronted by a series of ethical problems. [Rothstein] discusses topics such as genetic privacy, patient –physician relationship, confidentiality, population screening, DNA data banks, non-medical uses of genetic information—such as in schools, by law institutions, ethic and legal aspects. . . . A highly recommended, inexpensive book."—Zvi Laron, Journal of Pediatric Endocrinology & Metabolism

"The first book devoted entirely to genetic privacy. . . . Genetic Secrets will give policy makers and other interested in the social implications of genetics an appreciation of the complexities involved in protecting genetic privacy."—Michael S. Yesley, Medical Humanities Review

ISBN: 9780300080636
Publication Date: November 10, 1999
528 pages, 6 1/8 x 9 1/4
15 b/w illus.