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
Date Written: January 15, 2021
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: Suggested Citation