Congress Near Deal on Genetic Test Bias Bill

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Congress Near Deal on Genetic Test Bias Bill

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By Pollack,

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, Republican of Oklahoma, said on Tuesday that he

would support a bill to make it illegal to deny health insurance

coverage based on the results of genetic testing.

Information About the Genetic Information Nondiscrimination Act of

2007 (genome.gov)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 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 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.

Proponents of the bill say the negotiated changes do not affect the

substance of the legislation.

Harry Reid, the Nevada Democrat who is the Senate majority leader,

sent an e-mail message to his colleagues Tuesday asking for unanimous

consent to bring the bill forward to the Senate floor. Debate would

be limited to two hours, with only one amendment being offered to

reflect the agreed-upon changes.

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 concerns, citing among other things the

need for a firewall. 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.

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.

" You don't want to be denied health insurance when you are at risk

for breast cancer, " said M. Suter, an associate professor at

Washington University Law School. " But it seems to me you

really don't want to be denied health insurance when you have breast

cancer. "

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,

according to an article in The New England Journal of Medicine last

year by Kathy Hudson, director of the s Hopkins Genetics and

Public Policy Center in Washington. 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.

" We do certainly think that this legislation is a solution in search

of a problem, " said J. Eastman, executive director for labor

policy at the U.S. Chamber of Commerce, a business lobbying group.

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. 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.

, 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.

" 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.