Jesse Reynolds of the excellent Center for Genetics and Society had a good article last week on AlterNet about the risks of putting your genome data online, something the Google- and Genetech-funded startup 23andMe wants you to do. An excerpt:
Eminent technology investor and pundit Esther Dyson isn't worried about privacy policies, her personal records being hacked, or these companies cooperating with the National Security Agency. In fact, she wants you to turn over not just your medical records, but your personal genetic sequence as well.
In a recent interview on Charlie Rose, Dyson explained that she's among ten people about to put their health histories and genetic sequences on the internet for public viewing. She optimistically predicts that lots of us will soon entrust such information to online companies, albeit in private accounts.
Although Dyson acknowledged some of the troubling questions this prospect raises, she quickly dismissed them: "Like it or not, it's gonna happen."
Her rhetorical dodge is unfortunate. The convergence of biotechnology, the web, and big business is, in fact, quite alarming.
Here's the scenario: After signing up online, you receive a kit in the mail. In your home, you provide a saliva sample in the supplied cup and ship it off to a lab. For a few hundred dollars, much of your genome is sequenced, and the company places it on a website. It's then linked to your complete medical history, also online.
At this point, the company says, you can learn about your predispositions to diseases, conditions for which you carry a recessive gene, and genealogical information. The website offers medical advice, along with advertisements for potentially useful products and services. You can even communicate with people with similar genetic characteristics, making "friends" and forming "groups."
That seems to be the plan of a Silicon Valley start-up, 23andMe, named for the 23 pairs of chromosomes that hold your genome. Google, Genentech, and venture capital firms have invested at least $10 million in 23andMe. Its founder recently married one of Google's founders. Ms. Dyson is also an investor and board member -- something that didn't come up during her interview.