ROBERT SIEGEL, host:
From NPR News, this is ALL THINGS CONSIDERED. I'm Robert Siegel.
MICHELE NORRIS, host:
And I'm Michele Norris.
We've spent a fair amount of time on this program talking about racial discrimination or gender discrimination or bias against those who are older or overweight. Today, we're going to talk about genetic discrimination.
Congress is on the verge of breaking a 12-year impasse over legislation that would ban employers and health insurers from denying coverage or a job to anyone whose genetic test results indicate risk for future disease. The Senate has passed similar bills twice in recent years. And this January, President Bush added his endorsement.
President GEORGE W. BUSH: I really want to make it clear to the Congress that I hope they pass legislation that makes genetic discrimination illegal.
SIEGEL: Well, now for the first time, it looks likely the House may pass such a bill, too. That is welcome news in the science and health community, where many people say the bill is long overdue.
NPR's Julie Rovner reports.
JULIE ROVNER: Rebecca Fisher was 31 when she was diagnosed with an aggressive breast cancer that had already spread to her lymph nodes. Breast cancer runs in her family. A test showed both Rebecca and her mother have a gene that's been linked to breast and ovarian cancer. So before her only daughter, Katie, left for college five years ago, Rebecca pressed her to be tested, too.
Ms. REBECCA FISHER: At that point, I was just desperate to know. I think there was just something, Julie, about not wanting to release her into the world without that information.
ROVNER: The test showed Katie does have the breast cancer gene. Fisher says that she and her daughter had prepared themselves for that bad news, but there was something else the doctors said that scared them almost as much.
Ms. FISHER: They explained everything health-wise and summed it up by saying, don't ever be without a group health insurance plan. And that was a stunning, stunning realization.
ROVNER: Fisher says that was the first time she realized how little legal protection there is for people with a known genetic predisposition to cancer or any other disease. Employers can require anyone applying for a job to take a genetic test or fire a worker for having a genetic mutation.
And health insurance companies can use a family history or genetic-test result to deny coverage or raise premiums for anyone who doesn't have group health insurance. Rebecca saw Katie's career choices slipping away — forget being self-employed or jumping from job to job as many young people do. So far, Katie has been lucky. She graduated from college and got a job with a worldwide consulting firm.
Ms. FISHER: And she lives in Atlanta. She is under a group health insurance plan. And so she cannot ever be without that until we have something that protects her.
ROVNER: The person who's been working hardest to get that sort of protection written into law is Francis Collins. He directs the National Human Genome Research Institute. He says the lack of legal protection has stalled important research into genetic links to disease.
Dr. FRANCIS COLLINS (Director, National Human Genome Research Institute): The most common reason why people who, otherwise, want to be part of a research study whether it's about genetics of breast cancer or diabetes or whatever condition, decide not to participate is fear of discrimination. And we can't look them in the eye and tell them their fears are unwarranted until we have effective federal legislation to prevent that.
ROVNER: And as Collins told lawmakers at a hearing earlier this month, if people aren't willing to undergo genetic testing, there is no way to realize the promise of so-called personalized medicine.
Dr. COLLINS: We all have glitches somewhere in our instructions books that place us at risk for something. The opportunity to discover those and to individualize our individual plans of prevention is one of the major hopes that we have for reducing our health care costs and keeping people healthy.
ROVNER: Even the health insurance industry has signed onto the importance of genetic privacy. In theory, some business groups, however, worry that the bill could invite frivolous lawsuits.
And there are concerns about the language of the bill. Janet Trautwein is with the National Association of Health Underwriters. She worries how the term genetic information is defined.
Ms. JANET TRAUTWEIN (Executive Vice President, National Association of Health Underwriters): You know, now, that the definition is so broad you could bring in something like cholesterol screening and potentially define that as a genetic test.
ROVNER: Right now, health insurers are allowed to base the premiums they charge for individual policies on a person's medical history. Trautwein says if the new law walls off too much of that information, it could do more harm than good.
Ms. TRAUTWEIN: If we make the definition too broad so that we can ask fewer and fewer questions, then underwriters will have to be more and more conservative in their rates. The costs will go up, and I'm very afraid that people will be priced out of coverage.
ROVNER: But with Democrats back in charge in the House, those objections are carrying less weight. That's a relief to the bill's longtime sponsor, New York Democratic congresswoman and microbiologist Louise Slaughter.
Representative LOUISE SLAUGHTER (Democrat, New York): There needs to be some privacy, and most Americans want that. I think it will pass rather handsomely, and the nicest thing is the president will sign it. He's already said that.
ROVNER: The full House and Senate are expected to vote on the bill in the next few weeks.
Julie Rovner, NPR News, Washington.
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