Wednesday, February 13, 2008

Genetic NonDiscrimination Bill

During a visit to the National Institutes of Health (NIH) on Jan. 17th 2007, President George W. Bush urged Congress to pass long-stalled legislation to safeguard genetic privacy (see here). The Genetic Information Nondiscrimination Act of 2005 (S.306) passed unanimously in the U.S. Senate by a vote of 98-0 but has been stalled in Congress. The Genetic Information Nondiscrimination Act of 2007 was passed in the U.S. House of Representatives, by a vote of 420-3.

When urging Congress to pass this legislation Bush declared that “if a person is willing to share his or her genetic information, it is important that that information not be exploited in improper ways…We want medical research to go forward without an individual fearing personal discrimination.”

The latest issue of Nature has an editorial on the imperative to pass the Genetic Information Nondiscrimination Act. Here is a sample:

Technology development guru George Church — aka the information exhibitionist — is playing a salutary social role with his Personal Genome Project. Church is in the process of gathering phenotypic data and sequencing portions of the genomes of ten volunteers, including himself (see page 763). He intends to study how the genes of these people — all but one of whom have revealed their identities — influence their phenotypes, and to make those data public. Church's point is simple: information, including genetic information, can and should be freely available.

Whether or not one agrees with him, society had better be ready to deal with the results of such research, which is occurring against a background of explosive growth in the availability of genetic information. Consider that, in the five-and-a-half months since Nature last opined about this topic (see Nature 448, 969; doi:10.1038/448969a 2007), the number of diseases for which genetic tests are available to patients has grown by 8.4%, to 1,236.

This makes it all the more urgent that the US Congress enact the Genetic Information Nondiscrimination Act, which would protect people from being discriminated against by health insurers or employers on the basis of their genetic information. The entire scientific and medical community is adamantly supportive of this bill — as is the House, which passed it on a vote of 420:3 last April. In previous Congresses, the Senate has twice passed it unanimously. These are sure signs of an idea whose time has come, given that no less powerful a lobby than the US Chamber of Commerce had twisted arms to try to prevent its passage.

....the enormous research and clinical progress being made in the nascent era of personalized medicine will come crashing to a halt because people — despite the efforts of George Church — will remain rightly wary of taking genetic tests.