Get 20M+ Full-Text Papers For Less Than $1.50/day. Start a 14-Day Trial for You or Your Team.

Learn More →

Genetic Privacy: Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era

Genetic Privacy: Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era Genetic Secrets is a comprehensive account of the legal issues and options raised by privacy and confidentiality related to recent developments in genetics and electronic record keeping in the context of the organization of health care delivery in the United States. Following from a Department of Energy sponsored workshop on Medical Information and the Right to Privacy in 1994, the volume is a collection of essays that are largely independent of each other. This independence is reflected in points discussed as being controversial in one essay while being assumed in others. For instance, Tom Murray's challenge to the notion that genetic information should be treated as different from all other medical information seems not to be considered except in Mark Rothstein's final chapter, which serves as a summary and conclusion for the entire collection, complete with recommendations for American legislation. In fact, the concluding chapter might be a good starting point for some readers. Owing to the independent nature of the essays, the style and amount of detail vary considerably among chapters. For instance, the introductory chapter (Hood and Rowen) explains genetics with a degree of detail unnecessary to understanding any of the legal or ethical issues discussed in later chapters. Further, the authors state a controversial view that is clearly not shared by all of the subsequent authors: "If preventive or therapeutic measures were available to circumvent the deleterious effects of disease-predisposing genes (readily available to all), then the question of privacy of genetic information would not be compelling." The chapters on genetic testing and the schools and the chapter on forensic applications do not supply the careful analysis characteristic of many of the other chapters. A review of international legal developments provides a degree of detail that obscures the relevance of the essay to US law. Perhaps the most important contribution to the volume is Rothstein's five-point summary of the "more basic questions of the nature and structure of legislation." He suggests that the critical questions for optimal legislation are whether new initiatives should be (1) comprehensive or incremental, (2) national or state, (3) genetic or generic, and whether they should regulate (4) access to information or to use of information, and (5) unauthorized or authorized disclosures. Discussion of these issues is of critical importance to the development of careful law, in the United States and elsewhere. Some of the detail that appears irrelevant to US law becomes interesting when other, eg, international, legal perspectives are the context of deliberation. For instance, non-US readers might find of particular usefulness the chapters on international law (Knoppers and Le Bris), the limitation of the law in determining familial obligations (Andrews), the relevance of the availability of a universal health care system to legal alternatives (Kass), the careful parsing of different dimensions of genetic privacy (Allen), and whether genetic information ought to be managed differently from other medical information (Murray). Overall, Genetic Secrets is an excellent resource for anyone interested in legal concerns related to genetic privacy. A selective reading of essays and of Rothstein's concluding chapter provides a detailed overview of the issues for US law. Genetic Secrets is concerned about genetic privacy in terms of legal responses, and there is little reference to the related social, scientific, feminist, or ethical literature. Nevertheless, ethical and social research can be directed and its legal relevance discerned through the descriptions of legal concerns in this volume. Rothstein's practical and theoretically nuanced approach to US law encourages broader exploration of the critical assumptions behind legal proposals while attempting to limit law to its proper jurisdiction. http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png JAMA American Medical Association

Genetic Privacy: Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era

JAMA , Volume 280 (10) – Sep 9, 1998
Download PDF
5 pages

Loading next page...
 
/lp/american-medical-association/genetic-privacy-genetic-secrets-protecting-privacy-and-confidentiality-9TpbDa0K4G

References (0)

References for this paper are not available at this time. We will be adding them shortly, thank you for your patience.

Publisher
American Medical Association
Copyright
Copyright © 1998 American Medical Association. All Rights Reserved.
ISSN
0098-7484
eISSN
1538-3598
DOI
10.1001/jama.280.10.938-JBK0909-5-1
Publisher site
See Article on Publisher Site

Abstract

Genetic Secrets is a comprehensive account of the legal issues and options raised by privacy and confidentiality related to recent developments in genetics and electronic record keeping in the context of the organization of health care delivery in the United States. Following from a Department of Energy sponsored workshop on Medical Information and the Right to Privacy in 1994, the volume is a collection of essays that are largely independent of each other. This independence is reflected in points discussed as being controversial in one essay while being assumed in others. For instance, Tom Murray's challenge to the notion that genetic information should be treated as different from all other medical information seems not to be considered except in Mark Rothstein's final chapter, which serves as a summary and conclusion for the entire collection, complete with recommendations for American legislation. In fact, the concluding chapter might be a good starting point for some readers. Owing to the independent nature of the essays, the style and amount of detail vary considerably among chapters. For instance, the introductory chapter (Hood and Rowen) explains genetics with a degree of detail unnecessary to understanding any of the legal or ethical issues discussed in later chapters. Further, the authors state a controversial view that is clearly not shared by all of the subsequent authors: "If preventive or therapeutic measures were available to circumvent the deleterious effects of disease-predisposing genes (readily available to all), then the question of privacy of genetic information would not be compelling." The chapters on genetic testing and the schools and the chapter on forensic applications do not supply the careful analysis characteristic of many of the other chapters. A review of international legal developments provides a degree of detail that obscures the relevance of the essay to US law. Perhaps the most important contribution to the volume is Rothstein's five-point summary of the "more basic questions of the nature and structure of legislation." He suggests that the critical questions for optimal legislation are whether new initiatives should be (1) comprehensive or incremental, (2) national or state, (3) genetic or generic, and whether they should regulate (4) access to information or to use of information, and (5) unauthorized or authorized disclosures. Discussion of these issues is of critical importance to the development of careful law, in the United States and elsewhere. Some of the detail that appears irrelevant to US law becomes interesting when other, eg, international, legal perspectives are the context of deliberation. For instance, non-US readers might find of particular usefulness the chapters on international law (Knoppers and Le Bris), the limitation of the law in determining familial obligations (Andrews), the relevance of the availability of a universal health care system to legal alternatives (Kass), the careful parsing of different dimensions of genetic privacy (Allen), and whether genetic information ought to be managed differently from other medical information (Murray). Overall, Genetic Secrets is an excellent resource for anyone interested in legal concerns related to genetic privacy. A selective reading of essays and of Rothstein's concluding chapter provides a detailed overview of the issues for US law. Genetic Secrets is concerned about genetic privacy in terms of legal responses, and there is little reference to the related social, scientific, feminist, or ethical literature. Nevertheless, ethical and social research can be directed and its legal relevance discerned through the descriptions of legal concerns in this volume. Rothstein's practical and theoretically nuanced approach to US law encourages broader exploration of the critical assumptions behind legal proposals while attempting to limit law to its proper jurisdiction.

Journal

JAMA – American Medical Association

Published: Sep 9, 1998

There are no references for this article.