23AndMe seems, at first, to be a neat little company. Give them a vial of spit and a questionnaire, and they’ll send you a little report about your genetics and help you find people you might be related to and where you come from. It’s a cool idea, except for when it destroys families. Or when they sell your genome to the highest bidder.
23andMe just announced a deal with pharmaceutical company Genentech for access to its database of 800,000 genomes. Yep, you paid them $100, you got back the genetic tests, and now they own the blueprint of you. And they’re going to sell it to anyone who wants to buy it.
To be fair, 23andMe has worked with pharmaceutical companies in the past, but those have always been direct deals where the patient knew what was involved. Essentially, all 23andMe did was serve as a contract genome sequencer for companies such as Pfizer, and those getting the test could do so conveniently and get a little fun out of it. This is the first deal they’ve made where a pharmaceutical company has come in after the fact to access the DNA of 23andMe customers who will have no idea who’s looking at their genome.
On the one hand, being able to find a few thousand people with the same disease in your family history with their genome fully sequenced is an incredibly useful tool. On the other hand, 23andMe has just revealed they charge you $100 to strip you of any control you might have over who looks at your DNA. It’s hard not to read that sentence and be utterly skeeved out by it, especially considering the company’s problems with the government and competence issues.
The good news: customers had to sign a separate consent form, meaning Silicon Valley’s concept of it being better to ask for forgiveness than permission appears to have extended only so far. But 85% to 90% of 23andMe’s customers did so, and now that there’s money in it, there will likely start being more competition in this game. So, welcome to the future, kids: Everything that makes you you? That’s now for sale.