Health Insurance, Employment, and the Human Genome: Genetic Discrimination and Biobanks in the United States

In COMPARATIVE ISSUES IN THE GOVERNANCE OF RESEARCH BIOBANKS: PROPERTY, PRIVACY, INTELLECTUAL PROPERTY, AND THE ROLE OF TECHNOLOGY, Giovanni Pascuzzi et al, eds., Springer 2013

U of Penn Law School, Public Law Research Paper No. 15-8

12 Pages Posted: 9 Jun 2015

See all articles by Eric A. Feldman

Eric A. Feldman

University of Pennsylvania Law School

Chelsea Darnell

Independent

Date Written: 2013

Abstract

Does genetic information warrant special legal protection, and if so how should it be protected? This essay examines the most recent (and indeed only) significant effort by the US government to prohibit genetic discrimination, the Genetic Information Nondiscrimination Act (GINA). We argue that the legislation is unlikely to have the positive impact sought by advocates of genetic privacy and proponents of biobanks. In part, GINA disappoints because it does too little. Hailed by its promoters as “the first civil rights act of the 21st century,” GINA’s reach is in fact quite modest and its grasp even more so. But GINA also fails by trying to do too much, tying the hands of insurers and employers in ways that may fail to serve the interests of individuals or society more generally. In short, if genetic discrimination is a problem that needs to be solved, GINA is not the solution. Instead, the Act creates a number of new and possibly intractable problems that may be more troublesome than what it originally set out to resolve.

Keywords: Genetic Information Nondiscrimination Act (GINA), employment and insurance law, genetics research, risk profiles and classification, fair discrimination, Norman-Bloodsaw v. Lawrence Berkeley Laboratory, Burlington Northern Santa Fe Railroad Company v. EEOC

Suggested Citation

Feldman, Eric A. and Darnell, Chelsea, Health Insurance, Employment, and the Human Genome: Genetic Discrimination and Biobanks in the United States (2013). In COMPARATIVE ISSUES IN THE GOVERNANCE OF RESEARCH BIOBANKS: PROPERTY, PRIVACY, INTELLECTUAL PROPERTY, AND THE ROLE OF TECHNOLOGY, Giovanni Pascuzzi et al, eds., Springer 2013; U of Penn Law School, Public Law Research Paper No. 15-8. Available at SSRN: https://ssrn.com/abstract=2615949

Eric A. Feldman (Contact Author)

University of Pennsylvania Law School ( email )

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Chelsea Darnell

Independent ( email )

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United States

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