genomeboy.com

Thanks to all who emailed me about the New York Times article. Amy Harmon did her usual stellar job. And in case you’re wondering: yes, skin biopsies hurt.

I have to say, this whole extravaganza felt more like a walk-through or a dress rehearsal. Several of us did not get our sequence data yesterday and those who did got very rough, low-coverage data. So besides the fact that assembling the ten of us is like herding cats, what was the point? I think there were two: First, to demonstrate that the PGP is indeed a community. While personal genomics is finally about the individual, if we are ever to to destigmatize this information, then I think it’s critical that we start to move away from the Venter and Watson “me me me” models. There are now 5000 people in the queue to be PGP participants. Which brings me to the second point: even though we are hardly the first to make our SNP data public, my hope is that our collective example might nudge still more folks in that direction.

A note on my still-to-come sequence data: As loudly as I’ve agitated for public release of genomic data on this blog, I have reserved the right to redact any or all of my sequence data and my Coriell EBV-transformed cell line. I am alone among the PGP-10 in doing this and I feel a little sheepish about it, but I am unapologetic. I have two young daughters. Yes, genomic information is probabilistic information and my genome is not theirs. But I have what I imagine every other loving father has: a fierce instinct to protect his children. If I carry a known mutation in a highly penetrant mendelian disorder, I want them to find that out from me and my wife, not from the internet or from some precocious classmate.

My public profile is here. I am bracing myself for the SSRI spam.

My SNP and sequence data will eventually be there as well. My SNP data will appear are on SNPedia very soon now.