US Senate unanimously passes genetic nondiscrimination bill

Thursday, April 24, 2008

Human chromosomes, which contain a person's genes.
Image: Steffen Dietzel.

In a unanimous 95-0 vote Thursday, the United States Senate passed a bill that would forbid employers and health insurance companies from discriminating against someone based on information learned through genetic testing.

The Genetic Information Nondiscrimination Act, described by Massachusetts Senator Ted Kennedy as "the first major new civil rights bill of the new century," will now be sent back to the House of Representatives, where it could be approved as early as next week. President George W. Bush, who would have to sign the bill for it to become law, has voiced his support for the legislation.

The bill forbids employers from firing, refusing to hire, or otherwise discriminating against employees based on genetic information, such as a family history of a hereditary disease. It also makes it illegal for employers to request genetic information of an employee or the employee's family.

Health insurance companies are also addressed in the bill, which forbids them from requesting genetic information or using such information to set premium rates or determine enrollment eligibility. However, insurance companies would still have the right to base one's health coverage on the actual presence of a genetic disease.

Cquote1.svg Americans can now be confident that their genetic information cannot be used by health insurers or employers in harmful or hurtful ways. Cquote2.svg

—Kathy Hudson, director of the Genetics and Public Policy Center

"For the first time we act to prevent discrimination before it has taken firm hold and that's why this legislation is unique and groundbreaking," said Maine Senator Olympia Snowe, who sponsored the bill along with Sen. Kennedy and Sen. Mike Enzi. Snowe fears the threat of discrimination may discourage people from undergoing genetic testing, which can help to diagnose a wide range of diseases and lead to lifesaving therapy.

Kathy Hudson, director of the Genetics and Public Policy Center, reports that 92 percent are worried that information gained in genetic testing may be used against them. "After a very long wait," she says, "Americans can now be confident that their genetic information cannot be used by health insurers or employers in harmful or hurtful ways."

One part of the bill addresses this concern. "Federal legislation establishing a national and uniform basic standard is necessary to fully protect the public from discrimination and allay their concerns about the potential for discrimination," the bill reads, "thereby allowing individuals to take advantage of genetic testing, technologies, research, and new therapies."

Oklahoma Senator Tom Coburn initially blocked Senate action on the bill, warning that it could potentially lead to excessive lawsuits against employers and insurers. But after changes were made to the bill to ease his concerns earlier this week, he supported the legislation and allowed the Senate to vote on it. "We certainly improved the bill from a liability standpoint," said Coburn, an obstetrician.

Similar bills were unanimously passed by the Senate in 2003 and 2005, but in both years the bill stalled in the House. The current bill was passed in the House of Representatives a year ago by a 420-3 vote. A genetic nondiscrimination bill was first introduced 13 years ago by New York Representatives Louise Slaughter, who says the House will "get it out to the White House as quickly as we can."


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