Fear of Genetic Discrimination Brings Bill to Congress

From the WebMD Archives

Feb. 8, 2000 (Washington) -- President Clinton took to the pulpit to announce genetic discrimination protections for federal workers, but it may be optimistic to expect Congress will answer his challenge to pass similar provisions for everyone else.

Legislation passed in 1996 prohibits group health insurers from denying or dropping coverage -- or raising premiums -- based on genetic test results. But such protections do not exist for the 13 million Americans in the individual health insurance market. And health insurers are not barred from requesting or requiring that individuals take genetic tests.

Moreover, private-sector workers lack explicit protections against possible genetic discrimination by employers or potential employers.

Researchers are closing in this year on mapping the entire human genetic sequence, which could ease the development of powerful tests for genetic conditions. But Clinton said he was worried that people may be too afraid for their privacy to take advantage of these technologies.

Clinton today endorsed legislation from Rep. Louise Slaughter, D-N.Y., that would address these employment and insurance discrimination issues. Slaughter tells WebMD, "We're not talking about insuring a separate population or hiring a separate population -- it's us. The point is that each of us has faulty genes, none of us are immune."

Slaughter says that she has been trying -- without luck -- to schedule hearings on her bill through the Commerce Committee. Commerce spokesman Pete Sheffield tells WebMD that the president's action "kick started the debate," and that hearings were possible. But he notes, "We get quite a few requests for hearings. There are only so many days in the year."

The bill has only 36 co-sponsors, only a handful of whom are Republicans.

And powerful forces -- insurers and employers -- say they don't support the legislation. Richard Coorsh, spokesman for the Health Insurance Association of America, tells WebMD, "We're concerned that some of the broad definitions could construe tests which normally are used by some insurers to assess risk as genetic tests." For example, he says that cholesterol screens and blood tests might be deemed genetic.

As a result, Coorsh says, "Insurers would have to pass on premium increases because they would lose the ability to properly assess risks for those people. Insurers would have to compensate by raising premiums for people in the individual market."


Meanwhile, Neil Trautwein, an executive with the National Association of Manufacturers, accused the president of election-year posturing. "That was some unfortunate 'fearmongering,'" he tells WebMD. "I'm not aware of anything in this area that has occurred, anyone who has been denied a job based on genetic tests."

Legislation, Trautwein says, would be a bad idea. "This is an area that is fraught with the potential for litigation. Employers are doing everything they can to get qualified workers through the door -- we're not about to check the genetic background with the resume."

But the president may succeed in tapping public fears about personal information being used against them. "It's fantastic momentum," Slaughter says of his legislative endorsement.


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