The Problems with Patchwork: State Approaches to Regulating Insurer Use of Genetic Information

DePaul Journal of Health Care Law, Forthcoming

26 Pages Posted: 20 Jan 2021 Last revised: 18 Feb 2021

See all articles by Jarrod Anderson

Jarrod Anderson

University of Iowa College of Law

Anna Lewis

Harvard University - Edmond J. Safra Center for Ethics; Independent

Anya Prince

University of Iowa College of Law

Date Written: January 15, 2021

Abstract

The growing availability of genetic testing in the clinical, research, and direct-to-consumer realms has caused people to fear that they will be discriminated against for their genes. In response, Congress passed the Genetic Information Nondiscrimination Act (GINA), which prohibits the use of genetic information in much of health insurance and employment.

Importantly, this prohibition does not apply to life, long-term care, and disability insurance.
While these lines of insurance are not federally prohibited from using an individual’s genetic information, several states do regulate use of genetic information in these insurance lines. This paper presents a comprehensive 50-state survey on regulation of how life, long-term care, and disability insurers can use genetic information. Overall, it shows that use of genetic information in these lines of insurance is still relatively unregulated and that the divergent strategies adopted across states are both weak and problematic. Consistent and even regulation, whether from the federal government or through model legislation is needed to adequately protect insurers and families alike.

Keywords: genetic discrimination, life insurance, disability insurance, long-term care insurance, state regulation

JEL Classification: K32, I18

Suggested Citation

Anderson, Jarrod and Lewis, Anna and Prince, Anya, The Problems with Patchwork: State Approaches to Regulating Insurer Use of Genetic Information (January 15, 2021). DePaul Journal of Health Care Law, Forthcoming, Available at SSRN: https://ssrn.com/abstract=3767117 or http://dx.doi.org/10.2139/ssrn.3767117

Jarrod Anderson

University of Iowa College of Law ( email )

Iowa City, IA
United States

Anna Lewis

Harvard University - Edmond J. Safra Center for Ethics ( email )

124 Mount Auburn Street
Suite 520N
Cambridge, MA 02138
United States

Independent ( email )

Anya Prince (Contact Author)

University of Iowa College of Law ( email )

Melrose and Byington
Iowa City, IA 52242
United States

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