Genetic Discrimination


"By signing this executive order, my goal is to set an example and pose a challenge for every employer in America, because I believe no employer should ever review your genetic records along with your resume."

President Bill Clinton
Tuesday, February 8, 2000

Today, at the American Association for the Advancement of Science, President Clinton signed an executive order prohibiting federal departments and agencies from using genetic information in hiring or promotion. The President also endorsed the Genetic Nondiscrimination in Health Insurance and Employment Act of 1999, which would extend these protections to the private sector and to individuals purchasing health insurance. The President stated his strong belief that genetic research must not undermine patient protections, and directed the Secretary of Health and Human Services to expedite FDA and NIH reviews of gene therapy guidelines and regulations.

Preventing Genetic Discrimination in the Workplace. Progress in genetic research has helped to detect and prevent health disorders; however, genetic test results can be misused by employers to discriminate against employees who are predisposed to particular ailments. In an effort to protect the privacy of genetic information, the President signed an executive order that prohibits every agency in the federal government from using genetic testing in any hiring or promotion action. The executive order, endorsed by the American Medical Association, the American College of Medical Genetics, the National Society of Genetic Counselors, and the Genetic Alliance, will:

Calling on Congress to Extend Privacy Protections to All Americans. In 1996, President Clinton signed the Health Insurance Portability and Accountability Act (HIPAA), which prevents group health insurers from using genetic information to deny individuals health insurance benefits. Today, President Clinton endorsed legislation that finishes the job begun by HIPAA by ensuring that genetic information will not be used to discriminate against Americans seeking employment, promotion, or health insurance. The Genetic Nondiscrimination in Health Insurance & Employment Act of 1999, introduced by Senator Daschle and Congresswoman Slaughter, would extend the privacy protections included in the President's executive order to the private sector.

Requesting Accelerated Review of Patient Protections in Gene Therapy. At the President's request, the Secretary of Health and Human Services will instruct the FDA and NIH to expedite their review of gene therapy guidelines and regulations to determine whether the current informed consent requirements need to be strengthened, and to ensure that information about these trials is shared with the public.

A Strong Commitment to Protecting Private Genetic Information. Under the Clinton-Gore Administration, the Human Genome Research Project has made swift progress, and is on schedule to complete a draft of the human genome by April of 2000. While these advances promise great benefits, they also carry potential risks to the privacy of genetic information. Today's actions are part of the Administration's longstanding effort to ensure that scientific advances do not compromise patient privacy protections.

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