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PGP mention on NPR yesterday

September 19, 2012

There was a mention of the Personal Genome Project in a story by Rob Stein on NPR yesterday: “As Genetic Sequencing Spreads, Excitement, Worries Grow”. In the context of the vastly reduced cost of personal genomes, George Church discusses the need for publicly shared personal genome and health data.

In addition to the promise of personalized medicine, the story also highlights privacy concerns. These privacy concerns are reflected in how most other genome research projects are conducted: it is very difficult for most researchers to share data, because research subjects have been promised privacy and this needs to be protected. In contrast, PGP participants have agreed to the public sharing of their data — an unusual waiver of privacy guarantees, made only after they demonstrate an understanding of the risks. This is creating an invaluable public resource, critically needed for scientific progress in this rapidly developing field.

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