Genetic tests cannot be a criterion for employment or health insurance, a new law on the anvil will say in the US. Legislators have reached an agreement on the issue.
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.
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.
Olympia J. Snowe, Republican of Maine, who has been a leading sponsor of the legislation in the Senate, called on her colleagues Tuesday to pass it. "More than a decade after we began the effort to protect Americans from genetic discrimination, the Senate is finally poised to see the fruition of those efforts," she said in a press release that quoted another senator describing GINA as "the first civil rights act of the 21st century."
President Bush has indicated that he supports the bill, although the White House has expressed some concerns over the liability of the employers over insurance coverage.
Those concerns have also been dealt with in recent negotiations, Congressional staff members 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.
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.
At the moment, genetic testing is in its infancy. Just in the last several months, companies like Navigenics, 23andMe and Decode Genetics have started to offer scans of a person's entire genome, looking for signposts that might signify risks of various diseases. In less than a decade it could become affordable to determine one's entire DNA blueprint.
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. Francis S. Collins, the director of the federal government's National Human Genome Research Institute, told Congress last year that about a third of people with family history of a disease declined to participate in such research at the National Institutes of Health.
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, writes Andrew Pollack in New York Times.
"There are appropriate uses of information, there are appropriate questions to ask, as long as there is no discrimination," said Mohit Ghose, spokesman for America's Health Insurance Plans, a lobbying group for the health insurance industry.
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.