House Approves Genetic Nondiscrimination Legislation; President Bush Expected To Sign Bill Into Law

The House on Thursday voted 414-1 to approve a bill (HR 493) that would prohibit discrimination based on the results of genetic tests, the New York Times reports (Harmon, New York Times, 5/2). The Senate approved the legislation 95-0 last week, and President Bush has said he will sign the measure into law (Coile, San Francisco Chronicle, 5/2).

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 (Kaiser Daily Health Policy Report, 4/25). The legislation would not ban the use of genetic information for long-term care and disability insurance, and it would not prevent insurers from denying coverage to people who have pre-existing health conditions (Rockoff, Baltimore Sun, 5/2). The health insurance provisions of the bill would take effect one year after the measure is signed into law, and employment provisions would take effect after 18 months.

According to the Times, the legislation "speaks both to the mounting hope that genetic research may greatly improve health care and the fear of a dystopia in which people's own DNA could be turned against them." If the bill is signed into law, more people are expected to participate in genetic testing and research efforts (New York Times, 5/2). Congressional leaders said that the bill would help facilitate genetic testing opportunities that likely would lead to more preventive and cost-saving treatments for various types of diseases, such as breast and prostate cancer, diabetes, heart disease and Parkinson's disease.

Opposition, Concerns
Rep. Ron Paul (R-Texas), who cast the only dissenting vote in the House, said, "Because of the federal government's poor record in protecting privacy, I do not believe the best way to address concerns about the misuse of genetic information is through intrusive federal legislation" (Holland, AP/Long Island Newsday, 5/2).

In addition, some medical experts and physicians said people should be cautious about having genetic tests or disclosing genetic information because of past issues with employment and health coverage discrimination, the Times reports. Nancy Wexler, president of the Hereditary Disease Foundation, said, "This gives us a weapon and a tool and a voice to try to push people to do what they should, but health care costs are soaring, and the urge to discriminate still exists," adding, "It's very hard to prove why somebody is firing you" (New York Times, 5/2).

Additional Comments
Bill sponsor House Committee on Rules Chair Louise Slaughter (D-N.Y.), who has proposed genetic nondiscrimination legislation for the past 13 years, said, "Since no one is born with perfect genes, we are all potential victims of genetic discrimination," adding, "By prohibiting the improper use of genetic information, Americans will be encouraged to take advantage of the tremendous life-altering potential of genetic research" (Lengell, Washington Times, 5/2).

HHS Secretary Mike Leavitt on Tuesday said that the legislation is an achievement to be "thrilled about," adding, "We're very pleased about how it's turned out" (Bloomberg/Boston Globe, 5/2). Alan Guttmacher, deputy director of the National Human Genome Research Institute, said, "It really has been this fear of discrimination that has been the largest barrier, we think, to widespread acceptance of genomic medicine" (Baltimore Sun, 5/2).

Karen Ignagni, CEO of America's Health Insurance Plans, in a statement said, "This legislation will strengthen patients' privacy protections while preserving their access to health insurance plans' innovative prevention and coordination programs" (New York Times, 5/2).

HHS Advisory Panel Recommends Stronger Oversight
In related news, a federal advisory panel on Thursday released a report calling for stronger federal regulations and monitoring of genetic testing facilities. The NIH Secretary's Advisory Committee on Genetics, Health and Society said that FDA should inspect laboratories and that genetic tests should be subject to the strictest type of evaluations, known as proficiency testing. The report highlighted oversight "gaps" and said that an increasing number of tests are "inappropriately offered bases on ... studies that have not been adequately validated." The committee also recommended stronger and more direct authority to take action against testing facilities that do not have proper certifications.

Marc Williams, a committee member and the director of the Clinical Genetics Institute at Intermountain Healthcare in Utah, said, "There are plenty of tests out on the market now that have essentially no scrutiny of any type."

An HHS spokesperson said the agency appreciated the committee's efforts and it "will carefully consider its recommendations" (Wilde Mathews, Wall Street Journal, 5/2).