The Role of the NHGRI in the Federal Legislative Process
Get Email Updates
Sign up for all the latest from NHGRI.

NIH-DOE Joint Working Group Recommendations

In 1995, the National Institutes of Health (NIH)-Department of Energy (DOE) Joint Working Group on Ethical, Legal, and Social Implications of Human Genome Research and the National Action Plan on Breast Cancer (NAPBC) developed and published the following recommendations for state and federal policy makers to protect against genetic discrimination ("Genetic discrimination and health insurance: an urgent need for reform, Science, Vol. 270, Oct. 20, 1995. ):

  • Insurance providers should be prohibited from using genetic information (information about genes, gene products, or inherited characteristics that may derive from the individual or a family member) 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 premiums based on genetic information or request for genetic services.

  • Insurance providers (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) 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 the individual's prior written authorization. Written authorization should be required for each disclosure and include to whom the disclosure would be made.

Last Reviewed: March 9, 2012