Congress closing in on a bill to ban genetic discrimination

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By Jim Abrams, Associated Press Writer
Thursday, April 24, 2008 | No comments posted.

WASHINGTON — Lawmakers have agreed to make it illegal for employers and insurance companies to deny applicants jobs and health care coverage because DNA tests show they are genetically disposed to a disease.

Supporters of the Genetic Information Nondiscrimination Act said Wednesday that the Senate planned to vote on it today. The House also is likely to give quick approval to the bill, sending it to President Bush for his signature.

A similar bill passed the House by a 420-3 vote a year ago. The White House, at the time, indicated its support for the legislation.

Sponsors reached an agreement Tuesday with Sen. Tom Coburn, R-Okla., who had been blocking Senate action on the bill.

The compromise tightens language to ensure there is a “firewall” between the part dealing with health plans and the section regarding employment so as to discourage inappropriate claims.

It also makes clear that, while individuals are protected from discrimination based on genetic predisposition, insurance companies still have the right to base coverage and pricing on the actual presence of a disease.

Sens. Olympia Snowe, R-Maine, Edward Kennedy, D-Mass., and Mike Enzi, R-Wyo., and Rep. Louise M. Slaughter, D-N.Y., have been pushing the issue for years, asserting that dramatic advances in genetic research make it crucial that people are protected from discrimination.

Snowe noted that nearly 32 percent of women offered a genetic test for breast cancer risk by the National Institutes of Health declined because of concerns about health insurance discrimination.

“Like discrimination based on race and gender, genetic discrimination is based on the unchangeable and — because the information must be sought out by the offender — is equally offensive,” she said.

Kennedy said the bill will “unlock the extraordinary potential of this new era of the life sciences.”

The legislation forbids sponsors of health coverage from requesting or using genetic information to adjust premiums or to determine eligibility.

It would prohibit employers from using genetic information in hiring, firing, assignment or promotion decisions.

The Senate unanimously passed versions in 2003 and 2005 but the House did not take up the issue until last year, when Democrats took control of both houses.

Slaughter said she had introduced the first version of the legislation 13 years ago. “Since no one is born with perfect genes, each one of us is a potential victim of genetic discrimination,” she said.

Sharon Terry, president of the advocacy group the Coalition for Genetic Fairness, said that when she started working on the issue 13 years ago there were only a few single-gene disorders in play. Now, she said, genetic information is essential to research into major diseases such as diabetes, cancer and heart disease or afflictions such as Alzheimers and Parkinson’s disease.

She said there are many people, such as those with colon cancer in their families, who want to enroll in clinical studies but don’t because of fear of discrimination. “They call us with lots of heartbreaking stories, and they are not willing to go public with those stories,” she said.

The bill is H.R. 493.

On the Net:

Congress: http://thomas.loc.gov/
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