From Science 2.0:
If you paid 23andMe to take a look at your DNA, maybe you wanted to know
more than why you like cilantro or are related to Genghis Khan, maybe
you thought you were advancing science.
Well, you are, in the
same old way marketers have long advanced science - by selling
information about customers. In this case, the DNA information of 1.2
million people, sold to more than 13 drug companies. Genentech paid $10
million to look at the genes of people with Parkinson’s disease.
Now,
that's good, it isn't like a Parkinson's treatment is going to come
from the government, but 23andMe customers paid to have their DNA info
sold to other companies. That is a sucker move.
It isn't the first time 23andMe has boldly gone into an ethical gray area. In 2010, a lot of alarms were being raised about their conduct regarding informed consent, in 2013 the FDA threatened them with "seizure, injunction, and civil money penalties" because of their marketing claims...MORE
Last year Gizmodo published "
Of Course 23andMe's Plan Has Been to Sell Your Genetic Data All Along" which seemed to fly under the radar:
Today, 23andMe announced what
Forbes reports is
only the first of ten deals with big biotech companies: Genentech will pay up to $60 million for access to 23andMe's data to study Parkinson's. You think 23andMe was about selling fun DNA spit tests for $99 a pop? Nope, it's been about selling your data all along.
Since 23andMe started in 2006, it's convinced 800,000 customers
to hand over their DNA, one vial of spit at a time. Personal DNA
reports are the consumer-facing side of the business, and
that's the one we're most familiar with. It all seems friendly and fun
with a candy-colored logo and quirky reports that include the genetic
variant for asparagus pee.
But 23andMe wasn't going to find a big business by selling spit
kits at the cut rate of $99. Instead, it's always been about enticing
customers to hand over their DNA sequences along with details of their
lives in a questionnaire to build a giant database—one that academic
researchers and biotech companies alike are, well, salivating over.
Big data has—excuse the metaphor—been in 23andMe's DNA from the
beginning. The company was founded by Anne Wojcicki, who's married to
(though now separated from) Google co-founder Sergey Brin. Last year,
Wojcicki told the New York Times that
the inspiration for 23andMe came from watching Google: "I remember in
the early days of Google, Larry [Page] would say, 'I just want the
world's data on my laptop.' I feel the same way about health care. I
want the world's data accessible."
While Wojcicki has been open about her larger ambitions for 23andMe,
none of that language is apparent in the marketing for its DNA test kits
to customers—for sneaky but obvious reasons. Its privacy policy notes that
it will share aggregated data to third parties (read: sell to pharma
and biotech companies) for scientific research if customers sign a consent document. Wojcicki told the San Jose Mercury News that 85 to 90 percent of 23andMe's customers do....MORE
