April 24 (Bloomberg) -- Companies and health insurers would be forbidden to use the results of genetic tests to deny people jobs or medical coverage under legislation approved 95-0 today by the U.S. Senate.
The measure, an amended version of one the House passed a year ago, is intended to protect people from discrimination based on DNA tests showing a genetic predisposition to disease. The House is expected to accept the Senate changes, and President George W. Bush is expected to sign the legislation.
Genetic tests can help predict a person's likelihood of getting cancers and other diseases and are used by researchers seeking new treatments. The legislation would bar insurers from using test results to deny coverage or raise premiums. Employers would be blocked from collecting genetic information on workers and using results in hiring or firing. This will enable people to get tested without fear of repercussion, supporters said.
``Up until now, our laws have not kept pace with emerging technology,'' Senator Olympia Snowe, a Maine Republican, said in an e-mailed statement after the vote. ``What good are genetic breakthroughs if their benefits are not realized by those they would benefit?''
Health plans and insurers also would be barred from requiring that patients take particular gene tests.
``This bill recognizes that discrimination based on a person's genetic identity is just as unacceptable as discrimination based on a person's race or religion,'' Senator Edward Kennedy, a Massachusetts Democrat, said. ``The administration cooperated and we are grateful for its support.''
Administration Support
Michael Leavitt, secretary of the Health and Human Services Department, said he hoped the House would move quickly to pass the measure.
``No American should have to worry that their genetic information will affect their ability to get health insurance or a job,'' Leavitt said in an e-mailed statement. ``New advances in medical research have been accompanied by an uneasiness about how this information will be used -- and that is a barrier we must remove.''
The legislation would make it easier for scientists working to uncover links between genetics and common diseases such as heart disease and diabetes, Kathy Hudson, director of the Washington-based Genetics and Public Policy Center at Johns Hopkins University, said in a telephone interview.
Reprisals Feared
More than 90 percent of people in the U.S. surveyed by the center say one of their biggest concerns about taking part in such medical research is the possibility that their genetic information will be used against them, Hudson said.
``Now, researchers will be able to say no, it won't happen,'' Hudson said.
The legislation also removes an obstacle that keeps some people from getting tested to find out whether they have a high risk of developing diseases such as breast or colon cancer, said Gregory Critchfield, president of Myriad Genetics Laboratories, a unit of Salt Lake City-based Myriad Genetics Inc.
``If we talk to patients who have decided not to be tested, the No. 1 reason given by those individuals for not being tested is the fear that they might possibly be discriminated against,'' Critchfield said in a telephone interview yesterday.
The issue became personal for David Resnick, a Boston attorney who works with local hospitals and researchers. His mother died 10 years ago of ovarian cancer and he wondered whether he might be a carrier of genes that may boost the chances of a man developing prostate cancer. The genes increase a woman's risk of breast cancer.
No Guarantee
He spoke with genetics counselors at Dana-Farber Cancer Institute in Boston about whether to get tested and agonized over what they told him.
``They explained to me that there is no guarantee that there wouldn't be genetic discrimination,'' he said in a telephone interview today. ``I didn't get the test done.''
The legislation should help assure patients that their genetic information can't be ``misused,'' Karen Ignagni, president of America's Health Insurance Plans, the Washington trade association, said in an e-mailed statement.
Lawmakers will follow the measure's implementation to ensure that people's privacy is respected, Senator Chris Dodd, a Connecticut Democrat, said.
``We will not hesitate to revisit the bill,'' he said on the Senate floor.
More than a dozen companies sell genetic tests, including Servx, DNA Direct, Roche Holding AG, Genelex and Laboratory Corporation of America Holdings.
Years of Effort
The bill was first introduced in the House 13 years ago by Representative Louise Slaughter, a Democrat from Rochester, New York. After its passage last year by the House, Senate action was blocked by Senator Tom Coburn, a doctor and Republican from Oklahoma. Coburn was concerned the bill would be a ``trial lawyer boon'' that would encourage lawsuits against employers and insurers, Coburn spokesman Don Tatro said in an e-mail.
Coburn allowed a vote after changes were made easing his concerns, Tatro said.
To contact the reporters on this story: Rob Waters in San Francisco at rwaters5@bloomberg.net; Aliza Marcus in Washington at amarcus8@bloomberg.net
To contact the editor responsible for this story: Reg Gale at rgale5@bloomberg.net.
Human chromosomes, which contain a person's genes. 


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.

"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."