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October 24, 2003

Senate Passes Genetic Discrimination Bill

The Senate last week unanimously passed a bill to prohibit employment and health insurance discrimination based on genetic information.  The Genetic Information Nondiscrimination Act (S. 1053), which passed the Senate by a 95-0 vote on October 14, would prevent health insurance providers and employers from using an individual’s genetic predisposition to a disease as a basis for denying access to health coverage or a job.

The completion of the human genome sequence has raised hopes of a medical revolution, but the bill’s supporters say that to take full advantage of this achievement, the public must be reassured that genetic information will be used to improve health and not to discriminate unfairly.  They report that many individuals faced with the option of undergoing genetic tests have declined because of fears of discrimination.

Such fears are understandable, says Senate Majority Leader Bill Frist (R-TN), a key supporter of the legislation.  “Genetic screening is a powerful tool, and can impart highly sensitive and very personal information.  The fear of genetic discrimination has the potential to prevent individuals from participating in research studies, from taking advantage of new genetic technologies, or even from discovering that they are not at high risk for genetically related illnesses.”

Advocates for the health insurance industry counter that there is little evidence that genetic discrimination is actually occurring, and that the Health Insurance Portability and Accountability Act (HIPAA) provides sufficient consumer protections, rendering the Senate legislation unnecessary.

The bill, which was introduced by Sen. Olympia Snowe (R-ME), was approved by the Senate Health, Education, Labor, and Pensions Committee in May after lengthy bipartisan negotiations.  Supporters hope the House will pass the Senate legislation as is and send it to President Bush, who has announced his support for it.  A similar—though more stringent—bill authored by Rep. Louise Slaughter (D-NY), H.R. 1910, has collected 228 co-sponsors from across the political spectrum. •••

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Copyright 2003 by the American Association for the Advancement of Science. All rights reserved.