I was an early adopter for the 23 and me service. I ordered the kit in January of 2008, in the early and heady days of personal genomics, when it still cost $1,000. I just recently ordered a limited time special of a similar service from the same company for $100. Better, faster, cheaper. I was inspired in this by Mike Cariaso, who had gone one step further / earlier and had some crazy chop-shop overseas run a SNP chip on him. Mike is (among other things) the author of snpedia. He’s also a traveling rock star of technology and one of the most hardcore technophiles I’ve ever met. More on that, later, perhaps.
I’ve never been 100% clear on why I got the tests done. At the beginning, I felt something of an obligation to try out this level of self-knowledge and report back on what it was like. I get into a fair number of cocktail party conversations about genetic privacy and bioinformatics, and it did force me to think deeply about the privacy and security implications of a cheap and easy test like this one. The Genetic Information Nondiscrimination Act was being debated at the time – and apocalyptic doomsayers were predicting a GATTACA like world split into the genetic haves and have-nots. I think that’s silliness. The world is split between the rich and the poor, just like it has always been, and that ain’t gonna change.
Frankly, I haven’t learned anything terribly surprising. Then again, I know my biological parents. One of the major markets for these things is adoptees and other people who don’t know very much about their ancestry or risk factors. In terms of the health benefits, I’m with the New England Journal of Medicine: If you have a spare $1,000 to spend on your health – get a gym membership – not a genome test.
There are a few groups of people who are releasing extreme amounts of data about themselves. The Personal Genome Project has released a lot of data about 10 participants, from google health records out to full-on DNA sequences. Genomes Unzipped is more of a homebrew collaboration who appear to be releasing mostly 23andme SNPs. They’re doing basically the same thing I did – but taking it to an extreme in the public square. Some are from the “in the future, there is no such thing as privacy (or tact)” school. Others are much more thoughtful and willing to take personal risks to advance society.
I would be happy to share the SNP data, but the medical records still tweak a privacy reflex for me. There are some things that I just don’t feel like talking about with strangers. This blog is here, in part, because I wouldn’t mind someone coming up to me and starting a conversation with “hey, you got your SNP chip done, what’s that like?” I would prefer that not to happen with some of my medical experiences, particularly as they were happening. This goes double if you’re in marketing. It’s not that it’s secret – it’s just not where I want to start, particularly with a stranger. “Hi Chris! How are those painful ankles today? Try our lineament!” Just not what I want to see, particularly when my ankles are hurting.
This stuff is getting easier and cheaper quite rapidly. I’ve been saying for a while that, in the future, genetic information is going to be like blood
type. You’ll know the important bits about your own body because it’s medically important. In addition, you’ll know bits of information about your peers and social group. 23andme is already offering this to some extent with the social networking features on their website. Further, privacy is diminishing. With effort, I can sequester some pieces of data about myself – but it’s getting less and less convenient to do so. While I could use cash everywhere, not have a cell phone, and constantly struggle to anonymize my internet activities – I find it more convenient to act as if I’m *usually* in the public square. In particular, when something is written down on the internet – it is forever. This means that there is a double incentive not to waste too much time on negativity. Not only is it a waste of time – but you live the rest of your life at a slightly higher risk that someone will come back and throw – whatever it was – in your face.
Anyway, here’s a SNP. It’s mine.
# rsid chromosome position genotype
rs3094315 1 742429 AG
There. I did it. I released my genome on the internet.
