Discrimination in the genes
AFTER BEING BLOCKED for years by Republican leaders in the US House, New York Representative Louise Slaughter's bill to ban genetic discrimination passed the chamber last week with 420 votes, and President Bush has vowed to sign it if it reaches his desk. The appeal of the measure is clear: As more hereditary disorders become detectable through genetic testing, more people are at risk of being denied employment or health coverage on the basis of their genetic makeup. And that threat could keep people from coming forward for genetic testing.
Yet the antidiscrimination measure has been held up because Senator Tom Coburn, Republican of Oklahoma, has placed a hold on the bill. He should let the Senate get on with passing the bill, whose importance will only grow as technology evolves.
Already, researchers can screen for genes linked to more than 1,000 diseases. Tests indicating that a patient has an elevated probability of developing breast cancer, for instance, are highly useful in planning medical treatment. But that knowledge can also be devastating, and not just because patients hear their future health troubles foretold.
Slaughter's bill would prohibit insurers from denying coverage to or raising premiums on a healthy person on the basis of genetic test results. Employers would be forbidden from making hiring or promotion decisions on the basis of genetic information. The measure would apply nationwide but would not prevent states from enacting tougher bills -- as Massachusetts already has.
When the Senate health committee approved a similar bill filed by Senator Edward Kennedy, it did so over the objections of Coburn, an abortion-rights opponent. Coburn said the bill contained an exception allowing discrimination based on genetic information from embryos and fetuses. Slaughter's House bill, now before the Senate, contains language closing that loophole. According to a spokesman, Coburn is still looking to review and "fine tune" the bill. But the senator already got what he wanted. He should lift his hold.
Opponents of genetic discrimination laws include some insurers and free-market purists, who have suggested that actual incidents of genetic discrimination -- of people being fired because they are thought to carry the gene for Huntington's, for instance -- are few and far between. But the dearth of cases so far gives Congress all the more reason to act now. Promising medical technologies tend to become commonplace. Lawmakers will have an easier time shaping the way insurers and employers use such test results while the technology is still taking hold than when genetic tests become routine.
