Genomes for all to see

The first release of the genome sequences (well, just some of the protein-coding bits) of the volunteers taking part in the Personal Genome Project (run by George Church of Harvard) got quite a bit of coverage earlier this week. The aim of the PGP is to eventually sequence the genomes of 100,000 people and to make that genetic info, along with medical histories, available to them, genetics researchers, and the public at large.

For me, the most interesting angle is that the PGP is a test to see what would happen when that info does get out into the open. The PGP challenges a strongly held notion that genetic and medical information should be private and would be misused if it wasn’t. It’s going to be tough to challenge this thinking.

The NY Times story quotes the director of Johns Hopkins’s Genetics and Public Policy Center saying that there could be unintended consequences that we can’t foresee. The Washington Post quoted a civil rights lawyer saying that this was dangerous and he even mentioned the science fiction movie Gattaca (which I thought was a bit over the top, but there you go). This Nature News story says two of the volunteers hesitate to reveal all about their genes: Steven Pinker of Harvard is thinking about whether to post the sequence of the APOE gene (which is linked to Alzheimer’s) and Misha Angrist of Duke will post SNP data but is unsure about posting the full sequence data.

If you wanted to peruse the medical records and exon data, go here. You can check out details on a 50 year old African-American man with asthma or a 54 year old white man with narcolepsy and who takes plenty of vitamins. Cultural change will definitely need to happen. It certainly felt weird to be browsing these folks’ medical files online, in the same way I would browse Amazon or iTunes.

Over in our Boston forum, Anna’s posted some questions about whether you’d volunteer to participate and “is it even necessary to publicly associate the name with the genes?” Please post your comments here.

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