genomeboy.com

Hi Mike:

…Thank you again for running the Promethease report on my genotype data. It’s quite remarkable and something one could spend days perusing–I probably will. When the time comes I will have no problem making it public.

But, having thought long and hard about this, I’ve decided that that time is not today. I want to wait until the PGP-10 data are released en masse before sharing my SNP data. There are three reasons for this:

1. Time for reflection. I will only get to make an initial disclosure once. Yes, my Affy 500K results are 500,000 “facts” about me, but collectively they still represent but a single, lonely organismal data point–just 0.02% of one guy’s genome. Thus, the data are not of much scientific use to anyone and so I don’t see a pressing need to throw it all out there without at least availing myself of the opportunity to look it over in private first. Plus it will certainly make my wife happier if I wait (the value of this last point cannot be overstated).
2. Mediation. Your site is fantastic, but it is finally a DIY, labor-of-love endeavor–you have no contractual, fiduciary or medical obligation to me (nor should you). I understand, I hope, that these are just risk alleles, the changes in absolute risk they confer are still pretty small, these alleles don’t work in a vacuum, some associations are tentative, everything is subject to change, etc. I am not a genetic determinist. But I do think for my first time out of the box, I would prefer to go through the process in a slightly more mediated, hand-holding way, which I am hopeful the PGP and perhaps a commercial service will provide. Yeah, I know: some Genomeboy I turned out to be…
3. The PGP process. I have absolutely no problem with what my fellow-PGP participant John Halamka did in disclosing and blogging about his SNP results — he is an early adopter extraordinaire and he should be commended for his willingness to do all of the courageous things he does and to do them alone. But for me personally, I want my data release to be part of something bigger. In one of my early interviews with George in February 2007, he talked about some of his own misgivings about outing himself as the first PGP subject and about how he would like the PGP to function as a team:

…’fessing up that you’re in a study is different from putting your DNA out into the public domain. Hopefully the PGP subjects will confer with each other and with the PGP team before they do that, [though] it will be within their rights [not to do so]. I won’t get very upset about it…

…I just think it’s a team effort and you need to have a little bit of team consideration. Even if it’s something you all plan to do eventually, maybe you all want to do it together, maybe you want to have a press release, maybe you want to make sure that the look and feel of the database are up to snuff before you do it. There are timing issues, there are issues about [how to] portray it in a positive light but with enough discussion of the negativity. I think that requires some nuance that the really gung-ho people will be too impatient to do. I think this is a work in progress, a successive approximation…

In the post-23andMe, post-Venter/Watson age, that view may seem quaint and naive, but it’s a sentiment that still resonates strongly with me and so this slight delay is what I am opting for. The world has waited this long for my SNP data–I suspect it can survive another few weeks.

best regards,
Misha

Update: Mike says, “All good reasons, but only one is necessary: It is your data.”