Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era

Front Cover
Mark A. Rothstein
Yale University Press, 1997 - Medical - 511 pages
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.
 

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Contents

Emerging Concepts and Values Anita L Allen
31
Is Genetic
60
Genetic Privacy in the PatientPhysician Relationship David
77
Relationship Eugene Pergament
92
Confidentiality Collective Resources and Commercial
161
BiomarkersScientific Advances and Societal Implications
184
Environmental Population Screening Jonathan M Samet
197
Are Developments in Forensic Applications of DNA Technology
212
The Law of Medical and Genetic Privacy in the Workplace
281
The Implications of Genetic Testing for Health and Life
299
Genetic Information in Schools Laura F Rothstein
317
Courts and the Challenges of Adjudicating Genetic Testings
332
Privacy Protection and the Moral Basis
355
Laws to Regulate the Use of Genetic Information Philip
369
European Data Protection Law and Medical Privacy
392
International and Comparative Concepts of Privacy Sonia Le Bris
418

DNA Data Banks Jean E McEwen
231
Genetic Information Family Relationships
255
A Policy Framework Mark A Rothstein
451
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About the author (1997)

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.

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