House Bill to Ban Genetic Bias Advances

The House passed a measure Wednesday that would ban employers and insurance companies from discriminating against people based on genetic makeup. President Bush says he will sign a bill that has been in the works for more than a decade. Some groups say the measure goes too far.

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When the vote finally came, almost nobody opposed a plan to stop what you might call DNA discrimination. After blocking consideration for more than a decade, the House approved a bill that regulates what people can do with your genetic information. It says employers or insurance companies cannot make decisions against you because of your genetic makeup.

NPR's Julie Rovner reports.

JULIE ROVNER: The bill's concept is fairly simple. Here's how New Jersey Democrat Rob Andrews explained it during the brief House floor debate.

Representative ROB ANDREWS (Democrat, New Jersey): If your grandmother had breast cancer, you shouldn't be denied a job or a promotion. That's what this bill says. If your dad is a diabetic, you shouldn't have to pay higher health insurance premiums. That's what this bill says.

ROVNER: Opponents to the measure say that cases of actual genetic discrimination have been rare. But New York Democrat Louise Slaughter, who first introduced the bill in the mid-1990s, rattled off several.

Representative LOUISE SLAUGHTER (Democrat, New York): For a woman who was fired after a genetic test revealed her risk for a lung disorder to a social worker, who despite outstanding performance reviews, was dismissed because some members of her family had Huntington's disease.

ROVNER: As approved by the House, the bill would outlaw the use of genetic information, everything from blood tests to family history, by employers in making decisions about hiring, promotion or job placement. Health insurance companies couldn't use genetic tests or family history to deny coverage or raise insurance premiums.

The Senate has twice approved similar bills, most recently two years ago. And President Bush has promised to sign it. But until now, the House had refused to allow a vote. So the floor debate alone was enough to lead geneticist Francis Collins, who was watching from the visitor's gallery, practically giddy.

Dr. FRANCIS COLLINS (Geneticist/Director, National Human Genome Research Institute): This is a hugely historic day, having the House of Representatives bring this to the floor and pass the bill. That has been the biggest hurdle for the bill in the course of the past several years.

ROVNER: Collins is head of the National Human Genome Research Institute. He's been urging Congress to pass a bill like this for nearly 15 years. He says the lack of protection has seriously held back genetic science.

Dr. COLLINS: At the present time, we're losing about a third of the people who want to be part of genetics research because they're afraid of discrimination. Those people will be able, now, to participate in our research programs without that fear. So this will give us a big boost.

ROVNER: But there are still a few hurdles for the bill to clear before it reaches the president's desk. Some House Republicans who voted for the measure say they still have some concerns. Cliff Stearns says he's worried about the fact that the bill preempts state genetic discrimination laws.

Representative CLIFF STEARNS (Republican, Florida): For example, my home state of Florida is very strong with clear definitions. If we superimpose this bill, it will create a lot of confusion, I think, in my state of Florida.

ROVNER: Stearns and other Republicans said they hope such concerns can be addressed in the Senate. The Senate's version of the bill was approved by a committee in January. But Massachusetts Senator Edward Kennedy told reporters that the measure is still being blocked from a floor vote by just one senator.

Senator EDWARD KENNEDY (Democrat, Massachusetts): We're to one hold, and I know that cad. I know exactly who it is.

(Soundbite of laughter)

Sen. KENNEDY: And I talked to the secretary of health, (unintelligible) to try and persuade him. It isn't a her, it's a him.

ROVNER: That him, in fact, is Republican Tom Coburn of Oklahoma. Reached by phone last night, Coburn said he's not opposed to the bill in principle, but he does still want to negotiate some of the details. All of which makes its ultimate passage within the next several weeks very likely.

Julie Rovner, NPR News, Washington.

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