Genetic-discrimination bill on way to passing

WASHINGTON — Capping 13 years of political wrangling, the Senate today is scheduled to pass landmark legislation 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 over the years but never in the same congressional session. A number of political and economic forces have converged to ensure passage, several Capitol Hill sources said Wednesday. They include the decision of Senate Majority Leader Harry Reid, D-Nev., to put the legislation on the front burner, and the growing use of DNA tests in modern health care.

Sponsors also reached an agreement Tuesday with Sen. Tom Coburn, R-Okla., who had been blocking Senate action. The compromise tightens language to ensure there is a firewall between the part dealing with health plans and the section regarding employment so as to discourage inappropriate claims.

It also makes clear that, while individuals are protected from discrimination based on genetic predisposition, insurance companies still have the right to base coverage and pricing on the presence of a disease.

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 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.

Gene tests 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, offer gene screening directly to consumers.

That has raised the specter of employers or insurers finding out that someone is at high risk for a disease and denying coverage or employment 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.

Kathy Hudson, director of the Genetics and Public Policy Center, 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.

Material from The Associated Press is included in this report.