Researchers recommend strategies for improved genetic privacy legislation

Summary author: Haley Riley

2026-02-26

(Press-News.org) U.S. policymakers addressing the public’s concerns about how genetic information could be used, in different insurance-related contexts, should consider several guiding questions, say authors of a new Policy Forum. Comprehensive genetic testing for both consumer and clinical use has led to the rise of genetic privacy laws like the Genetic Information Nondiscrimination Act (GINA), which bars health insurers and employers from using genetic information. As that 2008 Act was limited to health insurance, however, numerous states have since enacted bans on the discriminatory use of genetic information by other kinds of insurance (life, long-term care, disability, etc.). Though this legislation is popular, with strong bipartisan support, the efficacy of current policies remains a question. In this Policy Forum, Anya Prince and Theresa Eckel recommend five considerations for state lawmakers looking to write or revise their own genetic privacy legislation to prevent discrimination. Several of the researchers’ concerns regard legal definitions; some laws allow leeway regarding the definition of genetic information, and what constitutes discrimination. Carefully wording these restrictions is vitally important to the actual efficacy of the laws. For instance, a state law may prohibit life insurers from ‘unfairly discriminating’ based on genetic information, but this may not align with how the public would define discrimination. Separately, some state policies define genetic information at an individual level, without regulating the use of related familial genetic information. What’s more, some states only bar the cancelling of health insurance coverage based on genetic information, whereas genetic information can be used when underwriting and setting premiums. As new legislative sessions begin this spring, Prince and Eckel consider it essential that state legislators take their recommendations related to these matters into consideration. This would strengthen legislative protections against genetic discrimination in insurance.

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Researchers recommend strategies for improved genetic privacy legislation

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