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Volume 12 Number 80 News: Genetic Testing By a vote of 420-3, the House passed legislation that would make it unlawful for health insurers or employers to discriminate against individuals based on their genetic information or test results. The Genetic Information Non-Discrimination Act (H.R. 493), considered under suspension of the rules, would prevent group health plans from adjusting premiums on the basis of genetic information, would not allow the insurer to require genetic testing, and would not allow the collection of genetic information for purposes of underwriting. The bill also would amend Title VII of the 1964 Civil Rights Act, the Employee Retirement Income Security Act, and other laws to prohibit employers from refusing to hire, from discharging, or from otherwise discriminating against employees on the basis of genetic information. In reaction to the House passage, bill sponsor and House Rules Committee Chairwoman Louise Slaughter (D-N.Y.) said, "for years, we've held up genetic research because people were afraid that their genetic information would be used against them." H.R. 493 addresses these fears by prohibiting the improper use of genetic information by a person's employer or insurer, Slaughter said. Researchers sequenced the human genome in 2003, Slaughter said. However, genetic research needs to become more commonplace, rather than something that must be kept secret, in order for new treatments to be advanced along with the better methods to prevent diseases, she said. The bill will protect all Americans from discrimination based on genetic test results, since "there is not a single person on the planet who has perfect genes," Slaughter said on the House floor. Slaughter first introduced the legislation 12 years ago. House Education and Labor Committee Chairman George Miller (D-Calif.) said on the House floor that the action is "long overdue" and there is a "clear need" for the legislation. Many Americans now forgo genetic testing out of fear they will lose their jobs or insurance, he said. About one-third of potential study participants have declined to participate in genetic research at the National Institutes of Health out of fear of discrimination, Rep. Judy Biggert (R-Ill.) said on the floor. Companion legislation (S. 358) sponsored by Sen. Olympia Snowe (R-Maine) is pending in the Senate with 29 co-sponsors. The Senate Health, Education, Labor, and Pensions Committee approved the bill Jan. 31. The Senate is expected to take up the bill soon, but a Snowe spokesman told BNA April 25 that the exact timetable for its consideration remains under discussion. In an April 25 statement of policy, the Bush administration said President Bush favors enactment of the bill. Administration officials pledged to work with Congress to "further perfect" the legislation, the statement said. By Karen L. Werner
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