Genetic Discrimination

Policy Recommendations for Genetic Discrmination in Insurance or Employment

In the mid 1990s, the National Institutes of Health-Department of Energy (NIH-DOE) Ethical, Legal and Social Implications (ELSI) Working Group and the National Action Plan on Breast Cancer (NAPBC) cosponsored workshops on genetic discrimination in health insurance and the workplace.

The findings and recommendations of the workshops were published in Science. They have served as the foundation for policy-making in the Executive branch and for legislation (including legislation enacted into law) at both the state and federal level.

Insurance Discrimination

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.
     
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 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.
     

Genetic Discrimination and Health Insurance Workshop Report

Hudson, Kathy, et al, Genetic Discrimination and Health Insurance: An Urgent Need for Reform. Science, Vol. 270, 391-93. 1995 [PubMed]

Employment Discrimination

Definitions:
  • Employment organizations include, but are not limited to, employers, labor organizations, employment agencies and licensing agencies.
     
  • Genetic information" is information about genes, gene products, or inherited characteristics that may derive from the individual or a family member.
     
Recommendations:
  • Employment organizations should be prohibited from using genetic information to affect the hiring of an individual or to affect the terms, conditions, privileges, benefits or termination of employment unless the employment organization can prove this information is job related and consistent with business necessity.
     
  • Employment organizations should be prohibited from requesting or requiring collection or disclosure of genetic information prior to a conditional offer of employment, and under all other circumstances, employment organizations should be prohibited from requesting or requiring collection or disclosure of genetic information unless the employment organization can prove this information is job related and consistent with business necessity, or otherwise mandated by law.
     
  • Written and informed consent should be required for each request, collection or disclosure.
     
  • Employment organizations should be restricted from access to genetic information contained in medical records released by individuals as a condition of employment, in claims filed for reimbursement of health care costs, and other sources.
     
  • Employment organizations 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 will be made.
     
  • Violators of these provisions should be subject to strong enforcement mechanisms, including a private right of action.
     

Rothenberg, Karen, et al, Genetic Information and the Workplace: Legislative Approaches and Policy Challenges. Science, 275:1755-57. 1997. [PubMed]

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Last Reviewed: March 15, 2012