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Federal Government Policy on Genetic Discrimination in Insurance or Employment

Below are the relevant policies concerning federal employees and protection against genetic discrimination.

On May 21, 2008, President Bush signed H.R. 493, the Genetic Information Nondiscrimination Act of 2008 [georgewbush-whitehouse.archives.gov]. The bill was passed the Senate unanimously and the House by a vote of 414 to 1. The long-awaited measure, which has been debated in Congress for 13 years, will pave the way for people to take full advantage of the promise of personalized medicine without fear of discrimination.

On April 25, 2007, the U.S. House of Representatives passed the Genetic Information Nondriscrimination Act of 2007 [thomas.loc.gov], by a vote of 420-3. The act will protect individuals against discrimination based on their genetic information when it comes to health insurance and employment. These protections are intended to encourage Americans to take advantage of genetic testing as part of their medical care.

On April 1, 2004, the Genetic Alliance hosted a press briefing on the issue of genetic discrimination. Dr. Collins participated in this event and gave remarks encouraging the passage of genetic discrimination legislation. Heidi Williams, mother of two children who had been denied health insurance, also spoke about her experience with genetic discrimination.

On October 14, 2003, after years of negotiations, the U.S. Senate passed the Genetic Information Nondiscrimination Act of 2003 [thomas.loc.gov] (See Bill Summary of S.1053) by a vote of 95-0. The Senate Health, Education, Labor and Pensions (HELP) Committee had passed the bill by voice vote in May and no major changes were made when the bill came to the floor. This is the first time the Senate has passed a stand alone, bipartisan genetic nondiscrimination bill. The bill would prevent health insurers and employers from using genetic information to determine eligibility, set premiums or hire and fire people. It is now hoped that the U.S. House of Representatives will take up the bill.

President Bush expressed his strong support for the Genetic Information Nondiscrimination Act of 2003 on October 14, 2003 in a Statement of Administrative Policy [whitehouse.gov]. Earlier he devoted his June 23, 2001 weekly radio address to the need for such legislation and he has reiterated this stance at other public events since.

On February 8, 2000, the Executive Order 13145 to Prohibit Discrimination in Federal Employment Based on Genetic Information was signed. The Executive Order prohibits federal government agencies from obtaining genetic information from employees or job applicants and from using genetic information in hiring and promotion decisions.

The Executive Order's Definition of Protected Genetic Information:

  1. In general, protected genetic information means:
    1. Information about an individual's genetic tests.
    2. Information about the genetic tests of an individual's family members.
    3. Information about the occurrence of a disease, or medical condition or disorder, in family members of the individual.

  2. Information about an individual's current health status (including information about sex, age, physical exams, and chemical, blood, or urine analyses) is not protected genetic information unless it is described in subparagraph (1).

On July 14, 1997, members of patient advocacy groups, professional societies, along with genetics researchers and policy makers, gathered in the East Room of the White House in support of President Clinton's announcement that his administration will introduce legislation to prohibit health insurers from using the results of genetic tests or other indicators to discriminate against healthy people. In addition to the President, speakers at the event included Department of Health and Human Services (DHHS) Secretary Donna Shalala, Representative Louise Slaughter, and breast cancer activist Mary Jo Ellis Kahn.

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Last updated: November 15, 2012