Office of the Press Secretary

For Immediate Release February 8, 2000


Today, at an event at the American Association for the Advancement of Science, President Clinton will sign an executive order that prohibits every federal department and agency from using genetic information in any hiring or promotion action. This historic action will ensure that critical health information from genetic tests is not used against federal employees. The President today will also endorse the Genetic Nondiscrimination in Health Insurance and Employment Act of 1999, introduced by Senator Daschle and Congresswoman Slaughter, which would extend these protections to the private sector and to individuals purchasing health insurance. Finally, the President will state his strong belief that efforts to find genetic cures for disease must not undermine vital patient protections, and he will ask the Secretary of Health and Human Services to expedite FDA and NIH reviews of gene therapy guidelines and regulations.

AMERICANS FEAR THAT THEIR GENETIC INFORMATION WILL BE MISUSED. Progress in genetics has helped researchers and health care providers to detect and prevent health disorders; however, it can also be misused to discriminate against or stigmatize individuals. Some employers may try to use genetic tests to discriminate against workers -- even those who have not yet or who may never show signs of illness -- in order to avoid increased costs associated with workers who are genetically predisposed to particular ailments.

PREVENTING GENETIC DISCRIMINATION IN THE WORKPLACE. Today, the President will sign an executive order that prohibits every agency in the Federal government from using genetic testing in any hiring or promotion action. This 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:

PRESIDENT CALLS ON CONGRESS TO PROTECT THE PRIVATE GENETIC INFORMATION OF ALL AMERICANS. Today, President Clinton will endorse the Genetic Nondiscrimination in Health Insurance & Employment Act of 1999, introduced by Senator Daschle and Congresswoman Slaughter. This bill would extend the protections for genetic information included in the President's executive order to the private sector. In 1996, the President signed the Health Insurance Portability and Accountability Act (HIPAA), which prevents group health insurers from using genetic information to deny individuals health insurance benefits. The Daschle-Slaughter legislation finishes the job begun by HIPAA by ensureing that genetic information used to help predict, prevent, and treat diseases will not also be used to discriminate against Americans seeking employment, promotion, or health insurance.

AT THE PRESIDENT'S REQUEST, HHS ACCELERATES THEIR REVIEW OF PATIENT PROTECTIONS IN GENE THERAPY. Today, President Clinton will also address recent reports on lapses in gene therapy clinical trials. Specifically, that researchers failed to comply with federal regulations requiring the reporting of any serious illness or death, and patients may have been misinformed about the risks associated with the trials. At the President's request, the Secretary of Health and Human Services will instruct 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.

BUILDING ON THE CLINTON-GORE ADMINISTRATION'S STRONG COMMITMENT TO PROTECTING PRIVATE GENETIC INFORMATION. Since 1997, the President and Vice President have called for legislation that will guarantee that Americans who are self-employed or otherwise buy health insurance themselves will not lose or be denied that health insurance because of genetic information. Under the Clinton-Gore Administration, the Human Genome Research Project has made swift progress, and is on schedule to finish a draft of the human genome by April of 2000. While these advances promise great benefits, they also carry potential perils. Today's actions are part of the Administration's longstanding effort to ensure that we harness scientific advances to our most cherished values.

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