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Congress OKs Genetic Data Protection


May 2, 2008

The House on a 414-1 vote May 1 passed the Genetic Information Nondiscrimination Act and the White House said President Bush would sign the bill into law. Rep. Ron Paul (R-Texas) was the lone dissenter. The Senate approved the bill 95-0 on April 24.

The legislation prohibits discriminatory actions based on an individual's genetic data by employers and insurers. It also requires genetic information possessed by employers to be confidentially maintained and to be disclosed under tightly controlled circumstances.

Rules promulgated to implement the law following enactment could require specific steps to protect the confidentiality and integrity of genetic information in paper and electronic form. This would require significant changes in organizational processes of handing genetic information and in computer systems to secure the data.

Bill sponsor Rep. Louise Slaughter (D-N.Y.) and many organizations operating under the Coalition for Genetic Fairness worked for 13 years to get the legislation through Congress.

Other provisions of the bill, H.R. 493, include:

* Prohibiting enrollment restrictions and premium adjustments on the basis of genetic information or services;

* Preventing insurers under all types of health insurance programs from requesting or requiring an individual to take a genetic test;

* Prohibiting discrimination in hiring, compensation and other personnel issues based on genetic make-up; and

* Prohibiting collection of genetic information by employers and allowing genetic testing only to monitor adverse effects of hazardous workplace exposures.

Text of the legislation is available at congress.gov.

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