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Congress Approves Bill Guarding Workers' Genetic Information

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The Associated Press

Published: May 2, 2008

WASHINGTON - Companies would no longer be able to use genetic information like a person's predisposition for breast cancer, sickle cell or diabetes to make insurance or job decisions under a bill passed by Congress on Thursday.

The House voted 414-1 for the legislation a week after it passed the Senate on a 95-0 vote. The bill would bar health insurance companies from using genetic information to set premiums or determine enrollment eligibility. Similarly, employers could not use genetic information in hiring, firing or promotion decisions.

Rep. Ron Paul, R-Texas, was the only member of Congress to vote against the bill.

President Bush is expected to sign it into law.

Rep. Louise Slaughter, D-N.Y., said that for years doctors have been forced to tell women whose families have a history of breast cancer to refuse genetic testing for fear of discrimination.

"They have recommended to them that until a bill such as the one we are passing today becomes law in this country, they should not put at risk their health insurance," Slaughter said.

The use of genetics to determine insurance and benefit eligibility isn't unprecedented.

In the 1970s, several insurers denied coverage to blacks who carried the gene for sickle cell anemia. The Lawrence Berkeley National Laboratory in California secretly tested workers for sickle cell trait and other genetic disorders from the 1960s through 1993; workers were told it was routine cholesterol screening.

In another incident, Burlington Northern and Santa Fe Railway Co. paid 36 employees $2.2 million in 2002 to settle a lawsuit in which the workers alleged the company sought to genetically test them without their knowledge after they had submitted work-related injury claims. The railroad denied it violated the law or engaged in discrimination.

Without genetic testing, researchers say it will be more difficult to find early, lifesaving therapy for a wide range of diseases with hereditary links such as breast and prostate cancer, diabetes, heart disease and Parkinson's disease.

"We will never unlock the great promise of the Human Genome Project if Americans are too afraid to get genetic testing," said Rep. Judy Biggert, R-Ill., who sponsored the bill along with Slaughter.

Each person probably has six or more genetic mutations that place them at risk for some disease, according to the National Human Genome Research Institute. That does not means that a disease will develop, researchers said, just that the person is more likely to get it than someone without the genetic mutation.

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