Gene-test law is more likely

Democratic Congress improves chance to bar bias in hiring, insurance

January 30, 2007|By Jonathan D. Rockoff | Jonathan D. Rockoff,SUN REPORTER

WASHINGTON -- The shift in control of Congress has brightened prospects for approval of a law that would prevent employers or insurers from discriminating on the basis of genetic test results, according to legislators and other government officials.

When Republicans were in charge on Capitol Hill, opposition from business and industry helped scuttle repeated efforts in recent years to bar discrimination against people who, genetic tests showed, could be at risk of developing a serious illness.

But that effort is getting a new push, with President Bush's outspoken backing and a supportive Democratic majority in Congress sympathetic to arguments that, without such a law, patients can be reluctant to participate in valuable genetic research.

"This has been number one on the agenda for the genome research effort," said Dr. Francis Collins, director of the National Human Genome Research Institute, a federal agency that conducts and funds genetic research. "It's a real problem."

Corporate opponents say that medical privacy and disability laws already protect against discrimination and that adding to the rules would unduly burden companies because of the costs of complying.

Companies don't want to discriminate based on genetic test results, and legislation would burden them with frivolous lawsuits and complicated compliance issues, said Michael Eastman, executive director of labor law policy at the U.S. Chamber of Commerce.

The fight is an early harbinger of the legal issues raised by the proliferation of genetic tests, now conducted by 610 laboratories into more than 1,350 diseases.

"It is just one major public policy issue, and it might be the easiest" to address, said Karen H. Rothenberg, dean of the University of Maryland School of Law, who is scheduled to testify in support of the measure today before a House subcommittee.

Other issues include regulating the quality of the tests, educating doctors and nurses on their proper interpretation and appropriately applying results into court proceedings.

Scientists hope soon to use genetic tests to help people avoid serious illness. But the medical information gleaned from the tests could have other, less salutary uses.

Legislation in both houses of Congress would prohibit insurers from denying coverage or raising rates based on test results and would forbid employers from using the results to make hiring, firing and other personnel decisions.

Some companies have collected workers' genetic information and used it without their knowledge. In 2002, the Burlington Northern Santa Fe Railway agreed to pay $2.2 million to 36 employees who said the company illegally tested their blood samples to claim a genetic defect had caused their workplace injuries.

In 2003, Heidi Williams says a health insurance company twice refused to insure her two children, then ages 7 and 9, who carried a gene that could cause a liver disorder. Williams says the insurer, Humana, agreed to provide insurance in 2004 only after being contacted by a reporter.

"This is what's so frightening for me. Somebody could deny my children coverage in the future," said Williams, who lives near Louisville, Ky. After a month, Williams transferred the youngsters to her husband's newly affordable health plan.

A spokesman for Humana, Jeff Blunt, said privacy laws bar the company from speaking about a particular applicant or member.

"It is Humana's policy specifically not to deny coverage to any applicant based on someone's status as a carrier for genetic disease or based on the results of a genetic test. We only make coverage decisions based on diagnosed conditions," said Blunt. He said Humana supports the legislation.

In 2000, President Bill Clinton signed an executive order barring federal agencies from collecting genetic information or using it for personnel matters.

Supporters of the legislation say more action is needed.

"Individuals are not going for the tests they need because they are afraid of the repercussions," said Sharon F. Terry, president of the Genetic Alliance, an interest group that has led lobbying for the nondiscrimination bill.

Collins said one-third of patients interested in participating in government studies decide not to for fear of discrimination by employers or insurers, and "We can't tell them that that's an irrational fear unless this legislation is enacted."

jonathan.rockoff@baltsun.com

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