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
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.
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.