Look into the eyes of the PGP-10

Emily Singer has a fantastic article in MIT's Technology Review reviewing the current state of play in human genomics. A curious highlight for me was this panel of mug-shots from the PGP-10, the 10 high-profile volunteers currently having their genomes sequenced as part of the Personal Genome Project:
Top row from left: Misha Angrist, Keith Batchelder, George Church, Esther Dyson, Rosalynn Gill.
Bottom row from left: John Halamka, Stanley Lapidus, Kirk Maxey, Steven Pinker, James Sherley.

Links for each participant are to their profile on the PGP website, which includes information on medical histories and (for some participants) very preliminary DNA sequencing data (the tape on some of the subject's foreheads is to allow for analysis of facial morphology). For those who are unfamiliar with the PGP's mission, these 10 brave individuals have basically committed to the free publication of their medical and genetic information (including, eventually, their entire genome sequences) online - in the hope that it will encourage an open, frank discussion of the promises and challenges of the upcoming era of personalised medicine.

These photos have been available on the PGP website for a while, but there's something about seeing all of them together in a mainstream news article that emphasises just how bold a step the PGP-10 have taken in agreeing to publish their personal data online.

If you're interested in more details on the PGP you should read Thomas Goetz's recent piece in Wired, and both Misha Angrist and John Halamka have personal blogs worth following. If you think you've got what it takes to reveal your medical and genetic secrets online for the good of society you could also consider registering as a volunteer for the next phase of the Project (just make sure you read the disclaimer first).

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On what basis did they chose these individuals for analysis?
Its neither representative of the population as a whole (which is proportionally less white and less Jewish than this sample) nor representative of the scientific or genomic research community (no asians?).
I suppose they had to start somewhere.

Best ever example of a poorly selected sample set.

The PGP-10 were selected on the basis of having a sufficiently deep and broad understanding of genetics to truly give "informed consent" - in the sense that no-one can dispute that they understand exactly what they are getting into - and of being willing to dump their medical and genetic data online for the whole world to see. They were never intended to be a truly representative section of the broader US community.

As I understand it, the PGP-10 project is really primarily asking a social question rather than a deep scientific one: how do individuals and society react to the open availability of medical and genetic data? The scientific pay-offs will come later, with the much larger sample sizes and increased population representation of the expanded PGP.

Joe: no-one ever looks good in a mug-shot. :-)

To expand on Daniel's comments, the PGP-10 were required, under the initial study protocol, to have at least a master's degree in genetics - or the equivalent - in order to be deemed to be capable of providing informed consent to participate in the project.

In addition, the participants had to be available to be in Boston for tissue collection and project meetings, which further limited the sample size.

As Daniel rightly points out, the scientific pay-off - as well as a more representative cohort - are still a ways off.

- Dan

Since the participants are deemed to capable of providing informed consent to participate in the project, then, is it a good idea for them to know the whole genomic sequence of theirselves? They might find out some known harmful genes in the data of them own which might be linked to several serious and uncurable disease.

It is a tragedy to play a role as fortuneteller,however.

By Xuequn Bao (not verified) on 23 Dec 2008 #permalink