I’ve never been that interested in my origins to have done the 23andMe thing, so I’m personally not affected by this activity. Nevertheless:
Twenty-seven states and the District of Columbia have sued the genetic-testing company 23andMe to oppose the sale of DNA data from its customers without their direct consent.
The suit, filed on Monday in U.S. Bankruptcy Court in the Eastern District of Missouri, argues that 23andMe needs to have permission from each and every customer before their data is potentially sold. The company had entered an agreement to sell itself and its assets in bankruptcy court.
The information for sale “comprises an unprecedented compilation of highly sensitive and immutable personal data of consumers,” according to the lawsuit.
The genetic data at stake is especially sensitive and should be protected, because if it is stolen or compromised, it cannot be replaced. The data can be used to track not only the individuals who sent the kits, but also people related to customers, including yet unborn generations.
Why, and who is the prospective purchaser of all this “highly sensitive and immutable personal data”, you ask?
[23andMe] is poised to be acquired by Regeneron Pharmaceuticals for $256 million, according to the lawsuit. Regeneron is a biotechnology company that uses genetic data to develop new drugs.
So there’s no chance that the data will be abused in any way, then. [eyecross]
I think that my position on this kind of thing should be fairly obvious by now.
Your personal data — all of it — belongs to you, and to nobody else. Only you can authorize its use or dissemination, for whatever reason.
So if some asshole organization — let’s just call them Regeneron, for brevity’s sake — wants to use personal (i.e. unaggregated) data, they should have to ask you personally for your permission, each and every time. (Once data is aggregated, of course, your anonymity is no longer an issue.)
By the way, the same should apply to US Census data, but that particular bullet has gone through the church countless times already, and it’s a terrible precedent. (Which is why I always urge people not to fill out the “long form” census questionnaire every time this bit of government snoopery comes around.)