Genetic Nondiscrimination Bill Enacted, Protecting Patients


Patients will soon be able to undergo genetic testing without fear of discrimination from either their health insurers or their employers, thanks to a new law signed in May by President Bush.

The Genetic Information Nondiscrimination Act (H.R. 493), which passed both houses of Congress by wide margins, prohibits health insurers from using genetic information in determining eligibility or setting premiums and forbids employers from using that information for decisions about hiring, firing, job assignments, or promotions. The law also prohibits health insurers and employers from requesting or requiring that individuals take a genetic test. The health insurance provisions in the law will go into effect in 12 months, and the employment provisions will take effect in 18 months.

“Genetic testing holds great promise for improving public health, and patients must be able to trust that their genetic information will be protected from inappropriate and discriminatory uses,” Dr. Edward Langston, board chair of the American Medical Association, said in a statement. “This new law will allow patients to take advantage of scientific advances in genetics, such as screenings and therapies, without worrying that their personal health information could be used against them by insurers or employers.”

Supporters of the law are hailing it as the first civil rights legislation of the new millennium. In practice, experts say that it will mean that patients who might have been hesitant to undergo testing for fear of discrimination may be more willing. Some patients who would be good candidates for genetic testing have been refusing the tests, or in some cases taking them under an assumed name, said Sharon Terry, president of the Coalition for Genetic Fairness, and CEO of the Genetic Alliance.

The frequency of genetic discrimination has been difficult to document, but it's clear that fear of discrimination has been a barrier to genetic services for some patients, said Dr. Matthew Taylor, director of adult clinical genetics at the University of Colorado in Denver. For example, last year the Genetics and Public Policy Center at Johns Hopkins University, Baltimore, conducted a survey of 1,199 U.S. adults on genetic testing and discrimination. The researchers found that 92% of respondents expressed concern that the results of a genetic test for disease risk could be used against them in some way.

One of the biggest impacts of the law may be its potential to alleviate concerns about genetic discrimination among both patients and physicians, Dr. Taylor said.

Another area where the law is likely to have a significant impact is in research. Many informed consent forms for clinical trials include statements warning participants that they could be discriminated against on the basis of their genetic information, according to Ms. Terry. The Coalition for Genetic Fairness plans to mount an educational campaign to make patients and physicians aware of the new protections in the law in the hopes of increasing participation in research, she said.

The law was a long time coming, according to supporters. Legislation on genetic nondiscrimination was first introduced in 1995. The bill has had broad support in Congress for many years but couldn't get to the House floor under the Republican leadership, according to Susannah Baruch, associate director of the Genetics and Public Policy Center at Johns Hopkins University. The other change that propelled the legislation forward was the explosion in the number of genetic tests available, she said.

About 1,200 genetic tests can be used to identify thousands of health conditions, according to the Coalition for Genetic Fairness. Only about 100 genetic tests were available a decade ago.

Over time, the legislation has garnered support from a broad coalition of groups, including the health insurance industry. “With this landmark bipartisan legislation, Congress and the President have taken strong action to prohibit discrimination based on a person's genetic makeup and to protect patients' privacy as they pursue genetic evaluations,” Karen Ignagni, president and CEO of America's Health Insurance Plans, said in a statement. “This legislation also ensures that patients can continue to benefit from health plans' innovative early detection and care coordination programs that improve the safety and quality of care.”

But more work needs to be done, Ms. Terry said. The Coalition for Genetic Fairness has been working with Sen. Edward Kennedy (D.-Mass.) and Sen. Barack Obama (D.-Ill.) on better oversight for genetic testing in general. And the Agency for Healthcare Research and Quality recently issued a report calling for improvements to public health surveillance databases and health information technology used to monitor genetic tests.”

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