April 24, 2008 in Nation/World

Bill would stop bias based on gene tests

Rick Weiss Washington Post
 

WASHINGTON – Capping thirteen years of political wrangling, the Senate is slated to pass landmark legislation today that would prevent employers and health insurance companies from discriminating against people on the basis of genetic test results.

The House and Senate have passed similar legislation on several occasions over the years, but never in the same congressional session. Now a number of political and economic forces have converged to assure passage, several Capitol Hill sources said Wednesday.

They include the decision of Senate Majority Leader Harry M. Reid, D-Nev., to put the legislation on the front burner, and the growing use of DNA tests in modern health care.

The House is expected to follow by unanimous consent as early as next week, with a presidential signature expected soon after.

“This is a day for celebration,” said Francis S. Collins, director of the National Human Genome Research Institute and one of the leaders of the Human Genome Project, which in 2003 launched the age of molecular medicine and genetic testing. “I think the American public can breathe a sigh of relief that the fear of genetic discrimination, which has basically been a cloud over our future, has been dealt with.”

Gene tests, once largely limited to diagnosing rare inherited diseases, have become increasingly valuable to help predict individuals’ risk of getting more common diseases, including cancer, heart disease and diabetes. Moreover, a number of companies such as 23andMe and Navigenics, both based in California, now offer gene screening directly to consumers for a mix of medical, entertainment and social networking purposes.

That has raised the specter of employers or insurers finding out that someone is at high risk for a disease, then denying coverage or employment in order to avoid anticipated health care expenses.

Beyond banning that kind of discrimination, the Genetic Information Nondiscrimination Act would make it illegal for an insurer or employer to request or demand that a person get a gene test.

News of the imminent congressional action triggered gleeful e-mails among activists, who have fought for passage over the years.

“This is so fantastic that I cannot really comprehend it,” wrote Sharon F. Terry, president of the District of Columbia-based Genetic Alliance.

In an interview, Terry likened the process to “elephant labor.”

After last year’s passage by the House, the bill got caught up in a “hold” by Sen. Tom Coburn, R-Okla., who was concerned about some provisions opposed by insurers and the U.S. Chamber of Commerce, according to several sources close to the negotiations.

One concern had to do with the legal liability of insurers and employers accused of discrimination, and was resolved by adding clarifying language, sources said.

Another hang-up involved the provision that precludes an employer from insisting that an employee get a genetic test. Technicians in gene testing labs, it turns out, are routinely required to provide DNA samples to make sure the DNA they are testing has not been contaminated with their own.

“That provision would have inadvertently put an end to a practice that I think everyone would agree was good,” said Kathy Hudson, director of the Genetics and Public Policy Center, a D.C.-based nonprofit, adding that an exemption was eventually written.

Hudson praised the legislation for removing a major impediment to people’s participation in genetic research, which promises to clarify the underlying causes of many diseases and speed the development of new treatments. A survey done by the center in January found that 93 percent of respondents would not participate in such research unless it were illegal for employers and insurers to use the results against them.

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