ACLU Urges House to Move Senate-Passed Bill Prohibiting Genetic Discrimination

April 1, 2004 12:00 am

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WASHINGTON — The American Civil Liberties Union today urged the House of Representatives to take up S. 1053, the Genetic Information Nondiscrimination Act, passed unanimously by the Senate last year.

“Individuals need clear and comprehensive protections against genetic discrimination in the workplace and in the provision of health insurance,” said Christopher Anders, an ACLU Legislative Counsel. “The current patchwork of state and federal law does not provide needed basic protection against genetic discrimination.”

The lack of adequate protection against genetic discrimination is well recognized across the political spectrum. The Senate passed its genetic nondiscrimination bill, S. 1053, by a vote of 95 to 0. The bill also has the strong support of the White House.

The ACLU urged Congress to take immediate steps to prohibit genetic discrimination for three reasons. First, it is inherently unfair to discriminate against someone based on unchangeable characteristics that do not limit their ability. Second, genetic tests do not show with certainty that any individual will eventually develop a disease or indicate how severe their symptoms might be. And, finally, the threat of genetic discrimination leads individuals to decline genetic screenings and other health services to avoid revealing information that may be used against them.

The genetic nondiscrimination bill, as passed by the Senate, would:

  • Prohibit health insurers from restricting enrollment or adjusting fees on the basis of predictive genetic information.
  • Bar health insurers and employers from requiring genetic testing and from obtaining predictive genetic information.
  • Prevent employers from discriminating based on genetic information in all areas of employment, including hiring and compensation.

“Congress must protect employees from employers or insurance companies who have the opportunity to discriminate based on genetic characteristics,” Anders said. “The House should pick up the baton handed to it by the Senate by passing genetic privacy legislation to protect the health and livelihood of all Americans.”

To read the Coalition for Genetic Fairness’ letter to Speaker Hastert, go to:

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