Federal Regulation of Use of Genetic Information by Insurers

This paper analyzes policy developments at the national level during 1997, including proposed federal legislation and the response of the insurance industry. With broad bipartisan support, it appears that some form of federal regulation is likely within the next two sessions of Congress. The debate appears to be centering on two issues: the definition of genetic information and whether regulation will extend to a blanket prohibition on testing. The insurance industry is suggesting that restrictions based on an “unfair discrimination” standard would permit coverage and cost distinctions based on actuarially sound data, while the health care industry is opposed to any discrimination based on genetic information. A utilitarian ethical perspective would likely support restrictions on testing for life insurance but not health insurance.