genomeboy.com

I think most if not all of us PGPers are motivated by a desire to begin to desensitize people to their own genomic information, chip away at notions of genetic exceptionalism and convince folks that, even in a climate where the 14th Amendment might have become a hazy memory, public release of individual DNA information need not inspire fear.

I also think that, even when we disagree with him, we all have real affection for and trust in George.

Not long ago I gave someone something I’d written about the PGP in which I went on at length about him. She didn’t get it. “What is it with this guy? Why the man crush?” I’m not sure I’d call it that, but I suspect even his fiercest detractors (he has a few) would admit that he is a charismatic dude. This is a guy who was adopted twice, flunked out of Duke, and somehow landed on his feet at Harvard, in Walter Freaking Gilbert’s lab no less. Yet to meet him is to meet someone warm, outgoing, at peace, and who moves with a kind of Zen deliberation–not your stereotypical high-strung gene jockey.

And he’s unique in other ways. Not only has he distinguished himself in sequencing technology development, he is making a real effort to figure out how that technology will actually be used by average people en masse. It seems to me that just about every PGP communique is marked by variations on the same refrain: “When we get to a million” or “How do we scale this up?” And it’s that failure to recognize the PGP as a template rather than as an end in itself, I think, that may be the biggest misunderstanding surrounding George, or at least, the one that makes me the batshit craziest. Those who insist that George has assembled a little band of “celebrities” (I wish) pursuing “vanity genomics” just like Craig and Jim, and that this whole enterprise is a tragic misuse of the noble cause of human genomics (summarized beautifully here), don’t really understand either George or the project.

Could I have gulped down the PGP Kool-Aid in too much haste? Could my man crush be a manifestation of Stockholm Syndrome? Perhaps. But to suggest that the nine of us are somehow Paris Hilton to George Church’s Steve Wynn seems to me a bit of a stretch…alas…(I mean, I could do without the video and the jail time, but let’s not diminish Ms. Hilton’s achievements as a recording artist and author. Heh.)

Ultimately history will judge the PGP by what happens when people get their data and begin to make sense of it. Or not: How will the project deal with bad news lurking in subjects’ genomes (and not just the first ten, but the next thousand)? I’d be lying if I said I am feeling completely sanguine about that prospect and what it might mean for my family.

But for now I take no small comfort in the knowledge that the buck stops with George.