GINA expected in Senate 24 April

My e-mail has been buzzing all day with messages about efforts to get the Genetic Information Discrimination Act to the floor of the Senate. Word is this will happen tomorrow. If you haven't expressed your opinion yet through your Senators, please call or e-mail them ASAP. You can find them quickly by typing "state name" plus Senators into your favorite search engine. That will get you their preferred e-mail form and their contact phone number.

According to an article that appeared today in The New York Times,

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.

Here's more from that article:

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. 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.

Proponents of the bill say the negotiated changes do not affect the substance of the legislation.

Senator Edward Ted 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.

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.

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. 

The bill is expected to help mainly those applying for individual health insurance policies. That is because existing federal law already prohibits group insurance plans from discriminating against an individual based on genetic information. Some 35 states have laws against genetic discrimination in employment and 47 have them against discrimination in health insurance . . . But the laws vary widely. It is not clear whether the new federal law would take precedence.

Some groups representing businesses opposed GINA, saying it was an unnecessary and costly burden on employers. They said that such discrimination was not a problem and that there had been no cases brought under any of the state laws. But backers of the bill say such cases have occurred, although the people involved often do not come forward. Moreover, they say, genetic testing is in its infancy.

Supporters of the bill say that fear about misuse of genetic information has also discouraged people from participating in studies aimed at finding new genes that carry disease risk.

Health insurers have generally expressed support for the bill, with some reservations. They say the bill might interfere with their ability to request certain genetic tests — like ones that would help determine the best treatment for a patient.

Some experts, while welcoming the bill, said it did not go far enough. [No Federal laws, except for those relating to disabilities,]. . . prohibit discrimination once someone already has a disease, and some experts said such protection would have to be the next step.

Marie Godfrey, PhD


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