Protecting Privacy in Health Research: The Limits of Individual Choice
In his groundbreaking 1967 study, Privacy and Freedom, Alan Westin defined privacy as the claim of individuals, groups, or institutions to determine for themselves when, how, and to what extent information about them is communicated to others. Many data protection laws enacted since then have follow...
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Published in | California law review Vol. 98; no. 6; pp. 1765 - 1803 |
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Main Author | |
Format | Journal Article |
Language | English |
Published |
Berkeley
Joe Christensen, Inc. for students of School of Law, University of California, Berkeley
01.12.2010
University of California - Berkeley, School of Law |
Subjects | |
Online Access | Get full text |
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Summary: | In his groundbreaking 1967 study, Privacy and Freedom, Alan Westin defined privacy as the claim of individuals, groups, or institutions to determine for themselves when, how, and to what extent information about them is communicated to others. Many data protection laws enacted since then have followed suit, relying on choice -- often together with notice necessary to support choice -- as the key tool for protecting privacy, or even as the goal of those laws. Part I of this Article briefly surveys the objections to relying on consumer choice for protecting privacy generally, before examining the role of individual choice in health research in particular. Part II provides an introduction to health research and its regulation. Part III examines the Privacy Rule issued under HIPAA. Part IV considers the impact of the Privacy Rule and its consent requirement on both health research and personal privacy. |
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ISSN: | 0008-1221 1942-6542 |