The Senate on Thursday voted 95-0 to approve a bill (HR 493) that would prohibit discrimination based on the results of genetic tests, Bloomberg/Boston Globe reports (Bloomberg/Boston Globe, 4/25). The House is expected to quickly pass the bill and send it to the White House for final approval, according to CongressDaily (CongressDaily, 4/24). President Bush is expected to sign it (Zhang/Wang, Wall Street Journal, 4/25).

Under the bill, employers could not make decisions about whether to hire potential employees or fire or promote employees based on the results of genetic tests. In addition, health insurers could not deny coverage to potential members or charge higher premiums to members because of genetic test results. A bipartisan group of lawmakers on Tuesday reached a compromise to revise language in the bill at the urging of Sen. Tom Coburn (R-Okla.). Under the agreement, the bill -- per Coburn's request -- has a strengthened provision to prevent multiple lawsuits from being filed for the same violation (Kaiser Daily Health Policy Report, 4/23).

According to the Wall Street Journal, the bill aims to protect individuals who are carriers of genes linked to diseases but not those already diagnosed with a disease (Wall Street Journal, 4/25). Health insurers also would be prohibited from requiring members to take particular genetic tests, according to Bloomberg/Globe (Bloomberg/Boston Globe, 4/25).

Research Implications
Some experts say that the provisions and protections within the bill also will benefit research, the Baltimore Sun reports. According to the Sun, "potentially groundbreaking research into the molecular causes of disease has been stymied because possible study subjects, fearing repercussions, refuse to participate." The National Human Genome Research Institute estimates that at least one-third of interested patients declined further participation in studies over fears that they could face problems if their genetic test results were released, the Sun reports. Sharon Terry, president of the Genetic Alliance, said, "It's really about a revolution in medicine that we haven't seen since penicillin and the stethoscope, a tool that has not been broadly used so far but will really give us insight into disease and the body" (Rockoff, Baltimore Sun, 4/25).

Comments
Senate Health, Education, Labor and Pensions Committee Chair Edward Kennedy (D-Mass.) called the legislation "the first civil rights bill of the new century," adding, "With its passage, we take a quantum leap forward in preserving the value of new genetic technology and protecting the basic rights of every American" (Lengell, Washington Times, 4/25).

Sen. Olympia Snowe (R-Maine), who co-sponsored the Senate bill with Kennedy and Sen. Mike Enzi (R-Wyo.), said, "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." She said the more than 1,100 genetic tests that are available are "absolutely useless" if participants have to fear discrimination if they take the tests or participate in clinical trials (Abrams, AP/Houston Chronicle, 4/25).

Rep. Louise Slaughter (D-N.Y.), who has introduced a genetic nondiscrimination bill each term since 1995, said, "Since no one is born with perfect genes, each one of us is a potential victim of genetic discrimination," adding, "By prohibiting the improper use of genetic information, this bill encourages Americans to undergo the testing necessary for early treatment and prevention of genetic-based diseases."

Michael Eastman, executive director of labor policy at the U.S. Chamber of Commerce, said the new legislation is "more paperwork, more expense and more litigation." Eastman added that the bill does not pre-empt about 35 existing state laws that address genetic discrimination, meaning that employers will still have to follow those laws. Neil Trautwein, vice president of the National Retail Federation, raised issues with possible legal problems, such as workers who may decide to file lawsuits against their companies for age or gender bias in addition to genetic discrimination. He said, "The kitchen sink is thrown at employers" (Wall Street Journal, 4/25).

NPR's "All Things Considered" on Thursday reported on the bill. The segment includes comments from Kathy Hudson, director of the Genetics and Public Policy Center at Johns Hopkins University, and Rebecca Fisher, an advocate for the bill who has a gene mutation linked to breast and ovarian cancer (Rovner, "All Things Considered," NPR, 4/24). Audio of the segment is available online.

NPR's "Morning Edition" on Friday also reported on the bill. The segment includes comments from Kennedy; Francis Collins, director of the National Human Genome Research Institute; Enzi; and Fisher (Rovner, "Morning Edition," NPR, 4/25). Audio of the segment is available online.