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Government-Citizen Group Suggests Policies
to Limit Genetic Discrimination in the Workplace

March 1997

BETHESDA, Md. - A public-private consortium and a Human Genome Project (HGP) ethics group recommends in a March 21 Science article that employers should not use genetic information about an individual to deny jobs, promotions, health insurance or other workplace benefits. The authors spell out five specific recommendations they hope will form the basis for policy actions to prohibit job-related discrimination based on genetic composition and to ensure the privacy of genetic information.

The recommendations are the second set aimed at genetic discrimination to emanate from the National Action Plan on Breast Cancer (NAPBC) the NIH/DOE Working Group on the Ethical, Legal and Social Implications of human genome research (known as the ELSI Working Group). NAPBC is a partnership among federal agencies, consumers, health care professionals, scientists and private industry to catalyze national efforts in research, service delivery, education and public policy to eradicate breast cancer as a threat to the lives of American women.

"Fortunately, Congress has been very supportive of funding medical research, including genetics research, to find a cure and prevention for breast cancer," said Mary Jo Ellis Kahn, a breast cancer advocate with the National Breast Cancer Coalition and co-chair of the NAPBC s Working Group on Hereditary Susceptibility. "It is equally important that they support legislation to protect research participants and patients from misuse of genetic information," she added.

As rapidly evolving new technologies make it easier to find disease-related genes in human DNA, tests to determine who carries those genes are becoming increasingly common. Sometimes, knowledge about a genetic tendency toward a disease can help a person take steps to prevent it altogether or lessen its severity when the disease does strike. But according to the authors of the Science paper, people who might benefit from knowing their inherited risk for certain diseases may shun genetic tests or other family history information because they fear their employers will use them to deny job opportunities or health insurance.

"Genetics is giving us our best hope yet of understanding what goes wrong at the most fundamental level when disease occurs," said Francis Collins, M.D., Ph.D., co-chair of NAPBC s hereditary susceptibility working group and director of the National Human Genome Research Institute (NHGRI), part of the National Institutes of Health (NIH). NHGRI is a lead agency for the HGP.

"Genetic information can be a valuable part of individualized, preventive medicine that focuses on keeping a person well. But if people are more worried that genetic technologies will harm them rather than improve their health care, they will be unable to take advantage of the enormous opportunities genetics research offers," Collins said.

Misuse of genetic information in the workplace poses unique challenges to policy-makers. Employers in most states are not prevented from requiring medical examinations, including genetic testing, of workers or prospective employees. And, employers who do not perform the test directly may still have access to medical records containing information about a person's predisposition to disease. Yet most observers agree, genetic information should not be used to deny someone a job or a promotion.

Several states have attempted to develop legislative solutions to these problems, including Oregon, Wisconsin, Iowa, New Hampshire, New York, and, most recently, New Jersey.

At the federal level, the Equal Employment Opportunity Commission (EEOC) has interpreted the Americans with Disabilities Act (ADA) to cover on-the-job discrimination based on genetic information relating to illness, disease or other disorders. In that instance, the term genetic information includes an individual's inherited predisposition to disease. But, the authors say, there have been no genetic discrimination complaints filed with the EEOC, and the guidance has yet to be tested in court. So, the amount of protection actually provided by the ADA remains uncertain.

Laws that do attempt to prohibit genetic discrimination in the workplace put few limits on how much access an employer has to information in a worker s medical records, that is, the privacy of genetic information. According to Karen Rothenberg, J.D., M.P.A., director of the Law and Health Care program at the University of Maryland School of Law and lead author of the article, "Establishing sound policies to protect an individual's privacy is a difficult task. In order to activate legal protections, you have to disclose the very information you intended to keep private." That creates a huge dilemma for people who feel that supposedly private information was used to discriminate against them. To help resolve these problems, the NAPBC-ELSI group developed the following recommendations for consideration by both state and federal policy-makers:

  1. 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.

  2. 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.

  3. 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.

  4. 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.

  5. Violators of these provisions should be subject to strong enforcement mechanisms, including private right of action.

This set of recommendations follows an earlier publication by the NAPBC-ELSI group that focused on genetic discrimination in health insurance (Science, Vol. 270: 391-393, October, 20, 1995). Some of those earlier recommendations helped to stimulate work on numerous state and federal laws that prevent genetic information from being used against people, including the so-called Kassebaum-Kennedy bill, which the President signed into law as the Health Insurance Portability and Accountability Act of 1996. It is hoped, today's article says, these recommendations will stimulate a comprehensive approach to the use of genetic information in the workplace.

Genetic Information and the Workplace: Legislative Approaches and Policy Challenges. Karen Rothenberg, Barbara Fuller, Mark Rothstein, Troy Duster, Mary Jo Ellis Kahn, Rita Cunningham, Beth Fine, Kathy Hudson, Mary-Claire King, Patricia Murphy, Gary Swergold, and Francis Collins. Science, Vol. 275: 1755-1757, March 21, 1997. The authors are with the Committee on Genetic Information and the Workplace of the National Action Plan on Breast Cancer, which is co-ordinated by the U.S. PHS Office on Women s Health, and the National Institutes of Health-Department of Energy Working Group on Ethical, Legal and Social Implications of Human Genome Research.

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Last updated: September 01, 2006