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Tuesday, January 17, 2012

Genetic Exceptionalism: Genetic Information and Public Policy

Amanda K. Sarata
Specialist in Health Policy

The Human Genome Project, from inception through completion, has generated a great deal of debate over the appropriate uses, as well as potential misuses, of genetic information. Legislation that is specific to genetics is predicated on the concept of genetic exceptionalism, or the premise that genetic information is unique and, therefore, merits both special and different, or exceptional, treatment. As applied to public policy, this translates into genetics-specific legislative approaches to various health policy issues, such as the oversight of genetic tests, privacy, and discrimination in health insurance. Amidst considerable concern over the potential for the misuse of genetic information, most states passed genetics legislation during the past decade and a half in areas such as genetic privacy, genetic discrimination in health insurance, and genetic discrimination in employment. A genetic exceptionalist approach was taken by lawmakers in the Genetic Information Nondiscrimination Act of 2008 (GINA, P.L. 110-233). Because the idea of genetic exceptionalism has had a significant influence on public policy to date, Congress may want to consider how to treat genetic information in future legislative efforts, for example, in the areas of personalized medicine or oversight of clinical laboratory testing.

This report provides an overview of the nature of genetic information and its implications for individuals, family, and society. Individuals utilize genetic information to guide health care and other decisions, when possible, and may experience anxiety as a result of genetic test results. Genetic test results for an individual may often be informative for other close family members and thus influence their care decisions. Society must grapple with the effect genetic information may have on our conception of disease, as well as its impact on issues like privacy and equity. Data are presented on public opinion regarding the nature of genetic information, the need for special protections for genetic information, and the potential effect of the passage of GINA on attitudes toward the sharing of genetic information. The report ends by summarizing issues involved when considering legislation that addresses genetic information, including (1) separating genetic information from other medical information; (2) unintended disparities between “genetic” and “nongenetic” disease; and (3) the potential effect of legislation on participation in genetic research, on uptake of genetic technology and on the delivery of high quality health care.

Date of Report:
December 21, 2011
Number of Pages:
Order Number: R
Price: $29.95

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