Senate OKs Bill Outlawing Genetic Discrimination

The Senate has unanimously passed a bill more than a decade in the making that scientists say could help herald the age of personalized medicine. It would outlaw insurance or employment discrimination based on a person's genetics, which may make people less worried about being tested.

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Today, the Senate unanimously passed a bill that scientists say could help speed the age of individualized medicine. The bill has been more than a decade in the making. It would outlaw insurance or employment discrimination based on a person's genetics.

As NPR's Julie Rovner reports, the legislation should make people less worried about being tested.

JULIE ROVNER: In the year since scientists finished mapping the human genome, doctors have come up with scores of tests that can help people find out if they're likely to develop certain diseases or conditions. But during those years, people have been reluctant to get those tests or to participate in research studies to develop other tests, says Kathy Hudson. She heads the Genetics and Public Policy Center at Johns Hopkins University.

Dr. KATHY HUDSON (Director, Genetics and Public Policy Center, Johns Hopkins University): Over and over and over again, people express their worry about how that information will be used, will it be kept private and will insurers or employers be able to get that information and use it against them.

ROVNER: Rebecca Fisher is one of those people. She developed an aggressive form of breast cancer at age of 31, and later learned she had a gene mutation that's been linked to breast and ovarian cancer. She urged her only daughter, Katie, to be tested before she left for college, and they were told by genetic councilors that Katie, too, carried the mutated gene.

Ms. REBECCA FISHER (Former Medical Librarian): And 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 realization.

ROVNER: That's because group health plans can't discriminate based on genetic conditions, but until the bill that passed the Senate becomes law, individual health insurers can. Fisher shared this story with NPR last year, when the House passed the genetic discrimination bill. At the time, she was hoping that the measure would quickly become law so Katie, who just graduated college and gotten her first job, wouldn't be limited to working for big companies with generous insurance plans.

But Rebecca Fisher had reason to worry over the past year. Katie's job and insurance have been okay. But when she was hospitalized recently with abdominal pain, Katie kept her genetic mutation a secret from her doctors.

Ms. FISHER: She didn't disclose that when she was hospitalized and I was concerned. And we talked about it later and it did come up that she was reticent about all the other things that could happen to her as a result of someone having that information.

ROVNER: The problem turned out not to be ovarian cancer and it was Rebecca Fisher, fearful for her daughter's health, who told the doctors of her daughter's genetic condition. But when the bill becomes law, which is likely in the next few weeks, Fisher says it will take an enormous load off her mind.

Ms. FISHER: She will be moving to Boston with her firm in July. If she decides to continue in their employment, you know, she won't have any issues. But if she decides to leave and become self-employed, she can also do that. She just -she's 24 years old and she has all of these freedom that comes to her from this kind of legal protection. It's a huge relief, Julie, huge.

ROVNER: Kathy Hudson of Johns Hopkins says after spending more than a dozen years trying to get the bill passed, the next big task will be making sure that everyone involved knows that their protections are there.

Dr. HUDSON: Currently, doctors are alerting their patients to the risks that they face of genetic discrimination. And genetics researchers are alerting prospective research participants of these risks. And we now need to make sure that all of these folks understand what the protections are so that they don't unnecessarily worry about a risk that they no longer face.

ROVNER: The House is expected to give final approval to the measure next week and send it to President Bush, who said he would sign it.

Julie Rovner, NPR News, Washington.

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