Privacy and Confidentiality of Genetic Information: What Rules for the New Science?

Annual Review of Genomics and Human Genetics, Vol. 2, pp. 401-433, 2001

34 Pages Posted: 4 Feb 2010

See all articles by Mary Anderlik Majumder

Mary Anderlik Majumder

Center for Medical Ethics and Health Policy, Baylor College of Medicine

Mark A. Rothstein

University of Louisville - Institute for Bioethics, Health Policy, and Law; University of Louisville - Louis D. Brandeis School of Law

Date Written: July 1, 2001

Abstract

This review covers the ethical, legal, and policy issues associated with the generation and dissemination of genetic information. First, conceptual issues, such as the definition of terms and the description of two modes of analysis, are addressed. Research findings on public attitudes toward privacy and genetics and other factors relevant to policy making are also reviewed. Second, the example of genetic research is used to highlight the importance of attention to the intrinsic harms associated with violations of genetic privacy. Subtopics include national databases and biobanks, gene brokers, and pharmacogenomics. Third, the example of insurer access to genetic information is used to highlight the importance of attention to discrimination and other instrumental harms associated with failures of regulation. Fourth, a summary of the preceding sections leads into an outline of a program for realizing the benefits of the new science in a manner that affirms rather than erodes privacy and other important values.

Keywords: DNA, Forensics, law enforcement, data banks, codis, criminal law, search and seizure, fourth amendment, privacy

JEL Classification: k31, k32

Suggested Citation

Majumder, Mary Anderlik and Rothstein, Mark A., Privacy and Confidentiality of Genetic Information: What Rules for the New Science? (July 1, 2001). Annual Review of Genomics and Human Genetics, Vol. 2, pp. 401-433, 2001. Available at SSRN: https://ssrn.com/abstract=1547241

Mary Anderlik Majumder

Center for Medical Ethics and Health Policy, Baylor College of Medicine ( email )

One Baylor Plaza
Houston, TX TX - Texas 77030
United States

Mark A. Rothstein (Contact Author)

University of Louisville - Institute for Bioethics, Health Policy, and Law ( email )

Louisville, KY 40202
United States

HOME PAGE: http://www.louisville.edu/bioethics

University of Louisville - Louis D. Brandeis School of Law ( email )

Wilson W. Wyatt Hall
Louisville, KY 40292
United States

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