Protecting Privacy in Health Research: The Limits of Individual Choice

• Published in: California law review Vol. 98; no. 6; pp. 1765 - 1803
• Main Author: Cate, Fred H.
• 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: 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
• ISSN: 0008-1221

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.