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Ban on genetic bias brings law into age

In print: Tuesday, May 6, 2008

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There are times when the law has to catch up with science, and on Thursday Congress took a step in that direction. By huge bipartisan majorities, lawmakers passed a bill to bar discrimination by employers and health insurers on the basis of a person's genes. The move should be applauded, even if it stops short of everything proponents wanted.

The idea of shielding people from adverse consequences when third parties have access to their genetic information has been kicking around the halls of Congress for a decade or more. But until recently the concerns seemed more theoretical than real.

Now, however, with advances in gene mapping and the discoveries of genes that determine susceptibility to diseases such as certain cancers and diabetes, the issue is no longer one just for futurists, science fiction writers and obscure research labs. Today, genetic testing technology can arm patients with information that lets them take pre-emptive measures to reduce serious future health risks.

But doctors say that thousands of patients have avoided these valuable windows into the future for fear that the information could be used against them. Research has also been stymied by the unwillingness of so many people to allow the reading of their genetic tea leaves.

Without legal protection, choosing not to know one's future health prospects is a rational calculation. There is no reason to believe that health insurance companies would ignore the bad news in deciding what ailments to cover and how much to charge individual clients.

If the bill becomes law, as is expected, it would mean that insurance companies could not consider genetic information in setting rates or in determining what benefits to offer. And employers would be barred from using genetic information in hiring, firing or compensation decisions. A violation would carry a fine up to $300,000.

It is disappointing that the measure didn't also include protection from genetic discrimination in long-term care insurance and life insurance, but Congress accomplished quite a bit on behalf of medical science with what it did include. The 414-1 vote in the House on Thursday and the earlier 95-5 vote in the Senate are encouraging, considering the U.S. Chamber of Commerce's continuing opposition.

Our genes in many ways contain hints about our vitality and mortality. Those with an unlucky draw shouldn't also have to worry about losing a job or affordable health insurance coverage just when they need it most.