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Genetic Non-Discrimination



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The House of Representatives just passed (by a vote of 414 to 1) the Genetic Information Nondiscrimination Act, which the Senate passed unanimously last week. Despite these near consensus margins, this is a bill that has taken many years and several iterations to get to this point, and which is an important early marker in what will surely be some serious struggles in the years to come about the use and abuse of genetic information.

The bill prohibits insurance companies from requiring genetic testing or using genetic information to exclude individuals from insurance eligibility, and prohibits employers from using genetic information to discriminate against employees in hiring, promotion, and the like.

The Bush Administration had been pushing hard for such a bill since 2001, and both the House and Senate have actually passed different versions in the past few years, but final passage was repeatedly held up by concerns from some employers (which were quite legitimate, and have been addressed in this latest version) and even at one point caught up in a dispute over the use of genetic information collected from fetuses and embryos, which has also been addressed.

The immediate effect of the bill will probably have more to do with scientific research than with employment or insurance. Concern about the use of genetic information has been a big barrier to getting people to participate in genetic research in recent years, and among the foremost advocates of this bill were scientists hoping to relieve potential research subjects of that worry. That was also a major reason for the administration’s advocacy of the bill (silly rumors of a Republican war on science notwithstanding).

The bill really only begins to scratch the surface of the sorts of complex problems that genetic information will present to our health care system (and to the very concept of health insurance) in the coming years. But it’s a surface that needed some scratching.



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