On Capitol Hill, Congress is on the verge of breaking a 12-year impasse over legislation that would ban the use of genetic information by employers and health insurers.
The Senate has passed similar bills twice in recent years. In January, President Bush added his endorsement.
Now, for the first time, it looks likely that the House will pass such a bill, too. Many in the science and health community say the bill is long overdue, but some in the business and insurance community still have doubts.
'I Was Just Desperate to Know'
Rebecca Fisher is a former medical librarian living in Oakton, Va. She was 31 when she was diagnosed with an aggressive breast cancer that had already spread to her lymph nodes. Breast cancer runs in Fisher's family; a test showed both Fisher and her mother have a gene that's been linked to breast and ovarian cancer.
Before Fisher's only daughter, Katie, left for college five years ago, Fisher pressed her to be tested, too.
"At that point I was just desperate to know," Fisher says. "I think there was just something... about not wanting to release her into the world without that information."
The test showed that Katie has the breast cancer gene. Fisher says 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.
"They explained everything healthwise," says Fisher, "and summed it up by saying, 'Don't ever be without a group health insurance plan.' And that was a stunning realization."
That was the first time Fisher 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.
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 — she could never be self-employed or jump from one job to the next as many young people do. So far, Katie has been lucky. She graduated from college and got a job with a worldwide consulting firm.
"She is under a group health insurance plan," her mother says. "She cannot ever be without that until we have something that protects her."
Seeking Legal Protection
Francis Collins, who directs the National Human Genome Research Institute, has been working hard to get protection for families written into law. He says the lack of legal protections has stalled important research into genetic links to disease.
People who would otherwise want to participate in research studies decide not to sign up because they fear discrimination, Collins says.
"We can't look [potential study participants] in the eye and tell them their fears are unwarranted until we have effective federal legislation to prevent that," says Collins.
As Collins told lawmakers at a hearing earlier this month, if people aren't willing to undergo genetic testing, there's no way to realize the promise of so-called personalized medicine.
"We all have glitches somewhere in our instructions books that place us at risk for something," he says. "The opportunity to discover those, and to individualize our individual plans of prevention is one of the major hopes we have for reducing our health care costs and keeping people healthy."
In theory, even the health insurance industry has signed onto the importance of genetic privacy. But some business groups worry that the bill could invite frivolous lawsuits.
Defining the Terms
There are also concerns about the language of the bill. Janet Trautwein of the National Association of Health Underwriters worries about how the term "genetic information" is defined.
"The definition is so broad you could bring in something like cholesterol screening and potentially define that as a genetic test," Trautwein says.
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.
"If we make the definition too broad, so we can ask fewer and fewer questions, then underwriters will have to be more conservative in their rates," she says. "The costs will go up, and I'm very afraid people will be priced out of coverage."
But with Democrats back in charge in the House, those objections are carrying less weight — and it's a relief to the bill's longtime sponsor, congresswoman and microbiologist Louise Slaughter (D-NY).
"There needs to be some privacy and most Americans want that," Slaughter says. "I think it will pass handsomely, and the nicest thing is the president will sign it. He's already said that."
The full House and Senate are expected to vote on the bill in the next few weeks.
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