People learning through genetic testing that they might be susceptible to devastating diseases would not also have to worry about losing their jobs or their health insurance under anti-discrimination legislation the US Senate passed on Thursday.
The 95-0 Senate vote sends the Genetic Information Nondiscrimination Act back to the House of Representatives, which could approve it early next week. US President George W. Bush supports the legislation.
The bill, described by Senator Edward Kennedy as “the first major new civil rights bill of the new century,” would bar health insurance companies from using genetic information to set premiums or determine enrollment eligibility. Similarly, employers could not use genetic information in hiring, firing or promotion decisions.
“For the first time we act to prevent discrimination before it has taken firm hold and that’s why this legislation is unique and groundbreaking,” said Senator Olympia Snowe, a Republican who sponsored the Senate bill.
There are more than 1,100 genetic tests available today, she said, but these are “absolutely useless” if fear of discrimination discourages people from taking tests or participating in clinical trials.
Genetic testing could lead to early, lifesaving therapy for a wide range of diseases with hereditary links such as breast and prostate cancer, diabetes, heart disease and Parkinson’s disease.
“But right now the ability to realize those goals is somewhat limited” because of patients’ fears that the information will be used against them, said 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,” he said.
Congressional efforts to set federal standards to protect people from genetic discrimination go back more than a decade, to a time when there were only a small number of genetic tests. But now, with the mapping of the human genome in 2003, people have access to far more information about their hereditary disposition to such crippling afflictions as cystic fibrosis and Huntington’s disease.
Bill sponsors said that has increased the likelihood that a prospective health insurance company or employer will reject a person because of concerns that person will suffer a costly disease in the future.
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