HealthLawProf Blog

Editor: Katharine Van Tassel
Concordia University School of Law

Wednesday, April 23, 2008

Genetic Discrimination and Congress

The New York Times reports today on Congress' efforts to confront genetic discrimination.  Andrew Pollack reports,

Congress reached an agreement clearing the way for a bill to prohibit discrimination by employers and health insurers on the basis of genetic tests. Senator Tom Coburn, an Oklahoma Republican who had been almost single-handedly holding up action on the bill, said in an interview Tuesday that most of his concerns had been resolved and predicted that the bill would pass soon. Senator Edward M. Kennedy, who is chairman of the Senate Health Committee, said a bipartisan agreement had been reached to move the bill to the Senate floor.

Proponents say the new law, more than a dozen years in the making, would help usher in an age of genetic medicine, in which DNA tests might help predict if a person is at risk of a disease, allowing action to be taken to prevent it.

Some of the tests already exist, like one for breast cancer risk, and new ones are being introduced almost every month. But backers of the legislation say many people are afraid of taking such tests because they fear the results would be used to deny them employment or health insurance.  “This bill removes a significant obstacle to the advancement of personalized medicine,” said Edward Abrahams, the executive director of the Personalized Medicine Coalition. His group is an organization of drug and diagnostic companies, academic institutions and patient groups that advocate using genetic information to choose the most appropriate treatment for each patient.

The agreement would end a 13-year odyssey for the bill, first proposed in 1995 by Louise Slaughter, a House Democrat from western New York, who has been promoting it ever since.
The bill, called the Genetic Information Nondiscrimination Act, or GINA, has had broad support in Congress but has never managed to pass both houses in the same session.

It passed the Senate by votes of 95 to 0 in 2003 and 98 to 0 in 2005 but was kept from a vote in the House by Republican leadership. Last year, with Democrats newly in control, the House approved the bill 420 to 3. But this year Senator Coburn had placed a hold on the bill, preventing the Senate from voting on it.

One of Senator Coburn’s main concerns was that the bill might subject employers to civil rights lawsuits stemming from disputes over medical coverage. And employers that also finance their own health insurance, he said, might be sued twice. “We would have created a trial lawyers’ bonanza,” he said.  Senator Coburn, a medical doctor, had called for a “firewall” between the employer and insurance sections of the bill. “We withstood all the criticism we got from lots of people, and now we got it fixed,” he said. . . .

GINA would make it illegal for health insurers to raise premiums or deny coverage based on genetic information, and would prohibit employers from using such information for decisions on hiring, firing, promotions or job assignments. Genetic information, for the law’s purposes, would include not only tests that determine variations in a person’s DNA, but also a family history of a particular disease. But GINA does not prohibit discrimination once someone already has a disease, and some experts said such protection would have to be the next step. . . .

Some experts, while welcoming the bill, said it did not go far enough.

Mark A. Rothstein, director of the bioethics institute at the University of Louisville School of Medicine, said GINA did not cover life insurance and long-term care insurance and that there already were legal ways for prospective employers to gain a job candidate’s health information.  “GINA promises more than it delivers,” he said.

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