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 the Workplace:
Implications for Employment, Insurance and Privacy

Bethesda, Maryland
October 4, 1996

Members of the Ethical, Legal and Social Implications (ELSI) Working Group and the National Action Plan on Breast Cancer (NAPBC), genetics and health care professionals, lawyers, representatives from the insurance industry, and representatives from a number of federal agencies participated in this one-day workshop focusing on genetic discrimination and the workplace.

Based on the information presented at the workshop, the ELSI Working Group and the NAPBC developed a series of recommendations for state and federal policy-makers to protect against genetic discrimination in employment decisions.

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 activity.

  • 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 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 private right of action.

(For a more complete discussion of the recommendations see the news release: Government-Citizen Group Suggests Policies to Limit Genetic Discrimination in the Workplace or Rothenberg, K. et. al. "Genetic Information and the Workplace: Legislative Approaches and Policy Challenges." Science, 275: 1755-1757. 1997. [PubMed]

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Last Updated: October 1, 2012