Lawmakers Reach Agreement On Genetic Nondiscrimination Legislation; Bill Could Be Approved Soon

Main Category: Health Insurance / Medical Insurance
Also Included In: Genetics
Article Date: 24 Apr 2008 - 11:00 PDT

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Senate Health, Education, Labor and Pensions Committee Chair Edward Kennedy (D-Mass.) on Tuesday said that a bipartisan group of lawmakers had reached a compromise on a bill (HR 493) that would ban discrimination of U.S. residents based on the results of genetic tests, the New York Times reports (Pollack, New York Times, 4/23). The bill is expected to pass on a voice vote in the Senate on Wednesday (Johnson, CongressDaily, 4/23).

Under the bill, employers could not make decisions about whether to hire potential employees or fire or promote employees based on the results of genetic tests. In addition, health insurers could not deny coverage to potential members or charge higher premiums to members because of genetic test results.

According to the Times, the agreement ends "a 13-year odyssey" for the bill. Sen. Tom Coburn (R-Okla.), who had been "almost single-handedly" holding up action on the bill, said most of his concerns had been addressed and "predicted that the bill would pass soon," the Times reports (New York Times, 4/22).

Under the agreement, the bill -- per Coburn's request -- has a strengthened "firewall" provision between parts that address employers and insurers to prevent multiple lawsuits from being filed for the same violation. Coburn also had requested a "business necessity" exemption for employers to gather genetic information, but bill sponsor Sen. Olympia Snowe (R-Maine) considered that request a deal-breaker (CongressDaily, 4/23).

The House version of the bill was introduced in 1995 by Rep. Louise Slaughter (D-N.Y.), and Senate versions of the bill were passed in 2003 and 2005, but the House did not take action on them (Armstrong, CQ Today, 4/22). CongressDaily reports that House leaders are attempting to schedule a vote "as soon as possible." The House passed a different version of the bill, but Slaughter has agreed to the provisions in the Senate version, according to CongressDaily (CongressDaily, 4/23).

Comments
According to the Times, health insurers have "generally expressed support" for the measure but are concerned that the bill could restrict their ability to request certain genetic tests to find the best treatments for patients. Mohit Ghose, spokesperson for America's Health Insurance Plans, said, "There are appropriate uses of information, there are appropriate questions to ask, as long as there is no discrimination."

Some genetic experts who support the bill say its provisions do not go far enough. Mark Rothstein, director of the bioethics institute at the University of Louisville School of Medicine, said the measure did not have provisions for life or long-term care insurance. Rothstein said that employers already have other legal ways to gain access to prospective job candidate's health data. The legislation "promises more than it delivers," he said (New York Times, 4/23).

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