ELSI Program Reports

National Institutes of Health-Department of Energy, ELSI Working Group
and National Action Plan on Breast Cancer Workshop
on Genetic Discrimination and Health Insurance

National Institutes of Health
Bethesda, Maryland

July 19, 1995

Scientists, representatives from the insurance industry and members of the Ethical Legal and Social Implications (ELSI) Working Group and the National Action Plan on Breast Cancer (NAPBC) participated in this one-day session focusing on genetic discrimination and health insurance. Based on the information presented at the workshop, the ELSI Working Group and the NAPBC developed a series of recommendations and definitions for state and federal policymakers to protect against genetic discrimination.

Recommendations

  • Insurance providers should be prohibited from using genetic information, or an individual's request for genetic services, to deny or limit any coverage or establish eligibility, continuation, enrollment or contribution requirements.

  • Insurance providers should be prohibited from establishing differential rates or premium payments based on genetic information or an individual's request for genetic services.

  • Insurance providers should be prohibited from requesting or requiring collection or disclosure of genetic information.

  • Insurance providers and other holders of genetic information should be prohibited from releasing genetic information without prior written authorization of the individual. Written authorization should be required for each disclosure and include to whom the disclosure would be made.

Definitions

  • Genetic information is information about genes, gene products, or inherited characteristics that may derive from the individual or a family member.

  • Insurance provider means an insurance company, employer, or any other entity providing a plan of health insurance or health benefits including group and individual health plans whether fully insured or self-funded.

For a more complete discussion of the recommendations see: Hudson, K.L. et al. Genetic Discrimination and Health Insurance: An Urgent Need for Reform. Science, 70; 391-393. 1997. [PubMed]

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Last Reviewed: October 1, 2012