New Bill Provides Safeguard Against Genetic Discrimination

Legislation barring discrimination based on genetic testing may pave the way for greater use of genetic tests to detect various genetically mediated illnesses -- often before they even manifest themselves. With such early detection, development of disease can sometimes be avoided.

The Genetic Information Nondiscrimination Act of 2008, H.R. 493, (at the THOMAS Web site, type "H.R. 493" in the search box after selecting "Bill Number") passed the Senate by a 95-0 margin last week, and the House adopted the measure May 1 on a 414-1 vote. The bill prohibits employers from making hiring, assignment or promotion decisions based on genetic data.

The legislation also prohibits insurers from making coverage decisions or establishing premiums based on genetic test results, and it bars insurers from requesting or purchasing a beneficiary's genetic test data.

President Bush has indicated he will sign the legislation, thus making it possible for patients to take advantage of genetic testing without fear of discrimination or reprisals, said Kurt Bardella, press secretary for Sen. Olympia Snowe, R-Maine, sponsor of the Senate legislation.

"Much like our race, our age, our gender, we have no control over what genes we are given at birth," said Bardella, who describes the legislation as a "significant step forward."

"We offer safeguards against other kinds of discrimination, we need to do the same thing for genetic discrimination," he said.

During the past several years, medical science has made tremendous advances in the field of genetic testing, developing 1,500 genetic tests to detect a variety of illnesses at an early stage when disease progression can be halted or even prevented in some cases; yet, many people refuse to take the tests because of "justifiable" fears about discrimination, said Bardella.

"You have to ask yourself, 'What good are genetic breakthroughs if the benefits are not realized by the people who could benefit from them?'" said Bardella. "If genetic tests are left on the shelf, it is as if the progress we have made did not happen."

House and Senate members have been trying to pass a genetic nondiscrimination bill for the past 13 years. In 2003 and 2005, the Senate passed bills by unanimous margins, but the House failed to vote on the legislation. In 2007, the House passed a genetic nondiscrimination bill, but the legislation was blocked in the Senate.

The current Genetic Information Nondiscrimination Act has enjoyed overwhelming support in both the House and Senate. In addition, disparate stakeholders, such as local Chambers of Commerce and the insurance industry, have supported the bill, said Sharon Terry. Terry is president and CEO of the Genetic Alliance, a network of health providers and industry groups dedicated to transforming health through genetics.

Ten years ago, only a handful of genetic tests existed for rare diseases, but now, the tests are used to detect more common illnesses, creating a "very different scenario," Terry said. With enactment of H.R. 493, the "general public is going to be interested and care a lot about the fact they can finally obtain genetic information without fearing discrimination."