People seeking genetic testing to learn if they are predisposed to serious diseases would not have to fear losing their jobs or their health insurance under anti-discrimination legislation the Senate was to vote on Thursday.
H.R. 493, within sight of congressional approval after more than a decade of debate, would bar health insurance companies from using genetic information to set premiums or determine eligibility. Similarly, employers could not use genetic information in hiring, firing or promotion decisions.
The Senate is expected to pass the measure by a large margin. The House could take it up early next week, sending it to President Bush for his signature. The White House voiced support for a similar bill the House approved a year ago on a 420-3 vote.
Genetic testing could lead to early, lifesaving treatment for a wide range of diseases with hereditary links such as cancers, diabetes, heart disease and Parkinson’s disease.
“But right now the ability to realize those goals is somewhat limited from the concerns of our patients” that the information will be used against them, said Dr. David Herrington, a professor of cardiology at Wake Forest University and spokesman on genetic issues for the American Heart Association. The legislation “will help them both be more willing to participate in research and avail themselves of the benefits of genetic testing.”
With passage, said Aravinda Chakravarti, president of the American Society of Human Genetics, “researchers and clinicians can actively encourage Americans to participate in clinical trials and appropriate genetic testing unencumbered by the fear of discrimination based upon the results.”
Sens. Olympia Snowe, R-Maine, Edward Kennedy, D-Mass., and Mike Enzi, R-Wyo., and Rep. Louise M. Slaughter, D-N.Y., have been pushing the issue for years.
“Like discrimination based on race and gender, genetic discrimination is based on the unchangeable and — because the information must be sought out by the offender — is equally offensive,” Snowe said.
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