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.

I have yet to articulate the appeal of the Personal Genome Project in a way that really captures how I feel. I think my fellow subjects have done a better job of it than I, especially here (subscription only–sorry!), where I think I managed the neat trick of coming across as both flaky and mercenary:

To Misha Angrist, a science editor at the Duke Institute for Genome Sciences and Policy, it was less practical considerations than making his own genome more tangible. Angrist, who has a PhD in genetics, said he pipetted many DNA samples over the years, “and it was still always kind of an abstraction. Maybe I am naïve, but I’d like to think that having a look at my own genome might make it less of an abstraction.”

Angrist said that he plans to write about the project, which also factored into his decision to participate. “I think it’s much more interesting to write about something from the inside, as a participant observer.”

I stand by both of those statements and I don’t fault the reporter at all, but they are only a small part of what I was trying to say. As someone who presumes to call himself a writer, I should have known better the peculiar corollary of Murphy’s Law–the best parts of a 45-minute conversation will rarely make it into print; the dorkiest parts almost always will. So let me clarify: the PGP is, in my biased view, at the vanguard of efforts to understand personal genomics and its impact on health care, insurance, personal privacy, genealogy and all the rest. In my professional life I think about these things every day. But rarely are they any more than a thought experiment, that is, an abstraction (there has been one notable exception I hope to address in a future post).

This is not to say that when my genome goes up on the internet I will suddenly be overwhelmed by a sense of impending doom. Hardly. But the PGP is not without risk to subjects (and to their family members, another topic of a future post). A variety of bad things could happen that would be anything but abstract. When the ten of us signed the PGP consent form, those things (or at least some of them) were outlined in fairly stark terms:

…anyone with sufficient knowledge could take your genome and/or posted medical information and use them to (1) infer paternity or other features of your genealogy, (2) claim statistical evidence that could affect your employment or insurance, (3) claim your relatedness to infamous villains, (4) make synthetic DNA and plant it at a crime scene, (5) reveal the possibility of a disease or unknown propensity for a disease.

Holy Sally Hemings, Batman. Can you imagine five more ready-made plots for a Lifetime Movie? At first glance, they seem remote, perhaps even comical (”Hey, uh, Mom, did you know you’re descended from the bastard son of Blackbeard?”). But remote is not the same as implausible. And so here is another reason I think the PGP is so appealing: truth in advertising. I’ve read a fair number of consent forms; all use the Latin alphabet, but how many are actually written in English? They often portray risks as vanishingly small or couch them in scientific jargon. Be honest, Dr. Principal Investigator: Is Billy Bob Study Subject really gonna parse your 12 single-spaced pages and understand all of the things that might go wrong? As George Church told me in an interview last year, “Most informed consent forms tell you everything you need to know except when to quit.”

George, I should say, is another appealing aspect of the PGP (so far, at least). I will try to introduce you to him through my eyes in the next post.

Jason links to Esther Dyson on the Charlie Rose show. He also links to other genetics-on-TV clips and muses on the frustrations and possibilities of video on the web.

Esther is one of my nine fellow subjects in the initial round of the Personal Genome Project. Watching her on Charlie Rose, I wonder if George Church didn’t accept me as a PGP volunteer in order to lower the mean IQ of the project…