Federal Officials Propose Rules to Enforce Ban on Genetic Discrimination

By Steve Vogel
Washington Post Staff Writer
Thursday, February 26, 2009

The federal government took a big step yesterday toward implementing a ban on genetic discrimination in hiring and promoting workers, a move that will expand the bounds of anti-discrimination law beyond the traditional realms of age, race, religion, sex and disability.

The new law, which bars discrimination by insurers and employers based on genetic test results, represents the first legislative expansion of employment discrimination law since the 1990 Americans With Disabilities Act.

At a hearing yesterday at its headquarters, the Equal Employment Opportunity Commission presented proposed rules for enforcing the Genetic Information Nondiscrimination Act, signed into law last year after a legislative struggle that lasted more than a decade.

"The addition of genetic-information discrimination to the EEOC's mandate is historic," said Stuart J. Ishimaru, acting chairman of the commission.

The law was enacted in response to breakthroughs in genetic testing, including the development of readily available tests that can detect whether individuals are at risk of certain diseases or other medical conditions.

The developments raised concerns that employers or insurers would use the information to deny coverage or employment to those at higher risk.

Susannah Baruch, law and policy director of the Genetics and Public Policy Center at Johns Hopkins University, said the enactment of the law marks "a new era."

"There are many factors an individual may consider in deciding whether to take a genetic test, but the fear of discrimination must not be one of them," said Baruch.

Baruch said that some patients have refused potentially beneficial genetic testing because of fears of how the information would be used and that others have kept results secret from their own doctors.

Andrew J. Imparato, president of the American Association of People With Disabilities, told the commission that the new law must be publicized. "We want to be able to tell people who are thinking about having a test that the results will not be used in a way that harms them in their current job or future jobs," he said.

Employer groups have raised concerns that the law might make businesses unfairly liable for knowing information about their employees' health.

Karen S. Elliott, a member of the Society for Human Resource Management, said her group is worried that "employers could find themselves involuntarily in possession of genetic information through the normal course of their workplace operations."

The EEOC's proposed rules are likely to be published this week in the Federal Register, opening a 60-day public comment period. The law is expected to become effective in November.

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