House Passes Genetic Nondiscrimination Bill; President Bush Expected To Sign

Main Category: Genetics
Also Included In: Health Insurance / Medical Insurance;  Women's Health / Gynecology
Article Date: 05 May 2008 - 5:00 PST

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The House on Thursday voted 414-1 to pass the Genetic Information Nondiscrimination Act, a bill (HR 493) to prohibit insurers and employers from discriminating against individuals based on genetic information that shows a predisposition to certain conditions, including breast cancer, the New York Times reports. The measure, which has taken 13 years to enact, now goes to President Bush, who has said he will sign it (Harmon, New York Times, 5/2).

GINA would prevent all insurance programs from raising rates or denying coverage to individuals or groups based on genetic information or genetic services. Health plans and insurers could not request or require that an individual take a genetic test. The bill includes "firewall" protections between the employer and health insurers (Cain, BNA, 5/2). Employers also would be prohibited from considering genetic information during decisions about hiring, firing, promotions or job assignments (Daily Women's Health Policy Report, 5/1). Employers who use genetic information to make employment decisions could be fined up to $300,000 per violation under the bill.

The insurance portion of the measure would go into effect one year after it is signed, while the employment portion would go into effect 18 months after enactment. If the measure is signed, more people are expected to undergo genetic screenings and participate in genetic research, the Times reports (New York Times, 5/2). The legislation would not extend protections to other forms of insurance, such as life insurance or long-term care insurance. The bill also would not bar health insurers from considering a person's pre-existing conditions in making decisions on coverage or rates. In addition, the legislation would not apply to the U.S. military (Daily Women's Health Policy Report, 5/1).

Several physicians have said that many people have been reluctant to undergo screenings to determine their risk of developing certain diseases -- such as breast cancer, diabetes or heart disease -- the Baltimore Sun reports. Some people also have been reluctant to participate in medical research, citing concerns of potential genetic discrimination, according to scientists (Rockoff, Baltimore Sun, 5/2). A recent NIH report found that 32% of women offered a test to determine their genetic risk of breast cancer declined because of concerns about potential discrimination (Coile, San Francisco Chronicle, 5/2).

Reaction

During House discussions on Thursday, both Democrats and Republicans cited anecdotes and polls finding that many people believe they should not be discriminated against because of genetic predispositions to certain illnesses (New York Times, 5/2). Rep. Louise Slaughter (D-N.Y.), a sponsor of the legislation, said the U.S. will not "fully reap the benefits" of the human genome mapping if lawmakers do not "ensure that our social policy keeps pace with the advancement of science" (Wayne, CQ Today, 5/1). Rep. Pete Sessions (R-Texas) said, "The refusal to utilize effective genetic tests hurts individuals, researchers and doctors alike. Lack of testing denies individuals important medical information that they could otherwise use to be proactively managing their health with their doctor" (Holland, AP/Fort Worth Star-Telegram, 5/2).

Karen Pollitz, director of the Health Policy Institute at Georgetown University, suggested the measure could strengthen arguments in favor of universal health coverage. "Ultimately unlocking all these genetic secrets will make the whole idea of private health insurance obsolete," Pollitz said (New York Times, 5/2). According to the Chronicle, the U.S. Chamber of Commerce and other business groups that are opposed to the measure were able to get "several concessions" from lawmakers, including language that would keep an employer from being liable in suits over genetic discrimination involving the employer's health plan (San Francisco Chronicle, 5/2).

NPR's "Morning Edition" on Friday reported on the bill. The segment includes comments from Slaughter, Kathy Hudson of Johns Hopkins University's Genetics and Public Policy Center and Francis Collins, director of the National Human Genome Research Institute (Rovner, "Morning Edition," NPR, 5/2).

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