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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Bibliographic Details
Published inCalifornia law review Vol. 98; no. 6; pp. 1765 - 1803
Main Author Cate, Fred H.
Format Journal Article
LanguageEnglish
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
Data integrity
Genetic research
Health information
Health Insurance Portability & Accountability Act 1996-US
Information legislation
Informed consent
Institutional review boards
Legal consent
Medical genetics
Medical research
Personal information
Privacy
Privacy rights
Prosser's "Privacy" at 50: A Symposium on Privacy in the 21st Century
Right of privacy
United States > US
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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.
ISSN:0008-1221
1942-6542