If you were getting excited about having a company like 23andme sequence your genome for you, it's time to put a lid on it. Apparently the State of California has decided that people should not be allowed to sequence their own genomes without supervision from a medical professional (despite the fact that many medical professionals are not trained to understand genomic data). The state sent out 13 cease-and-desist letters to companies offering genome sequencing to consumers last week. New York has sent similar letters to companies, including 23andme and Navigenics. The idea that the state should regulate your access to your own genetic data is bizarre at best, and proto-authoritarian at worst.
Over at Wired, which has been doing a great job covering this controversy, Thomas Goetz explains that this is rather like the state government refusing to let people give themselves pregnancy tests:
We neither want nor assume that doctors should have a gatekeeper role in establishing whether we are or are not pregnant, nor do we look to the state to protect us from that information. Pregnancy is a part of life, and it has all sorts of implications and ramifications. So too with DNA . . . The assumption that there must be a layer of "professional help" is exactly what the new age of medicine bodes — the automation of expertise, the liberation of knowledge and the democratization of the tools to interpret and put to use fundamental information about who we are as people. Not as patients, but as individuals. This is not a dark art, province of the select few, as many physicians would have it. This is data. This is who I am. Frankly, it's insulting and a curtailment of my rights to put a gatekeeper between me and my DNA.
And yesterday Aaron Rowe added fuel to the anti-gatekeeping side of this debate with his list of ten reasons why regulators should not hinder people's ability to gain access to information about their own genetic code. Most of his reasons boil down to "I like these companies and they seem like nice/well-informed people." That may be true, but as I've pointed out before a lot of these companies may be run by shysters. That doesn't matter. The fact is, this is consumer technology. We don't prevent people from buying computers even though they could lead to bewilderment and might be best set up with help from "professionals." Ultimately, as Rowe writes:
The price of genetic tests is high, and insurance companies are not paying for them, which makes the current situation much like an open beta test. Early adopters know that they are part of an experiment, and their experiences — good or bad — will allow each business to refine its services.
In other words, this is consumer biotech, not medicine. It should be treated more like a Macbook Air than like an AIDS test.