Will Genome Sequencing Beat Privacy Protections to the Finish?
J. Craig Venter recently announced his institute’s goal of sequencing the genomes of up to 50 people by the end of 2008, with an ultimate goal of sequencing 10,000 people’s genomes within 10 years. Personalized genome sequencing will open the door to powerful new therapies, but it also poses ethical concerns over the possibility of genetic discrimination. The first complete sequencing of an individual genome, including information from both parents, was Venter’s own.
The J. Craig Venter Institute pegs the current cost of personal genome sequencing at around $300,000 per genome, but the X Prize Foundation is offering a $10 million Genomics award for the first group to sequence 100 genomes in 10 days at a cost of $10,000 per sequence. The prize was originally set at $500,000, but in 2005 Venter pushed for the 20-fold increase.
With Venter barreling forward and the X Prize offering a significant incentive for competing groups, we are very close to the advent of widespread personalized genome sequencing, and the ethical framework must catch up to the science.
In the hands of insurance companies and employers, this information raises serious ethical concerns, but various protections are in motion. The question is whether legal protections will come fast enough.
The Genetic Information Nondiscrimination Act of 2007 (H.R.493) passed the House 420-3 on April 25, but it is currently held up in the Senate with no date set for debate. According to CQ (subscription), the President has indicated that he would sign the bill, but Sen. Tom Coburn (R-OK) placed a hold on it so that he and Sen. Edward Kennedy (D-MA) could work out Coburn’s concerns. Rep. Louise Slaughter (D-NY), who sponsored the House bill, speculated that the hold had to do with objections analogous to those raised when the bill went through the House Energy and Commerce Committee, which concerned language providing anti-discrimination protection for fetuses and embryos that would not influence debate over abortion laws.
Forty-one states have taken some form of legislative action, and the NIH-DOE Committee has suggestions for future protections.
Secretary of Health and Human Services Michael Leavitt and Harvard geneticist George Church have both expressed support for legislation prohibiting discrimination based on genetic makeup. Francis Collins, the director of the National Human Genome Research Institute, also called for the development of federal legislation to protect genetic privacy.
In 2000, President Clinton issued an executive order prohibiting discrimination in federal employment based upon genetic makeup.
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