In a recent review of 23 internet companies
by a consumer watchdog group, Privacy International, Google was the
only one to receive the lowest grade, reserved for those with
"comprehensive consumer surveillance and entrenched hostility to
With that low mark in mind, you might find the idea of
Google's having its virtual hands on your medical history a bit
disturbing. The company, and its rival Microsoft, are each taking the first steps toward the burgeoning, and lucrative, industry of electronic health-records management.
your medical records in an accessible, searchable and consistent format
is certainly appealing. But you, and your doctor, would also become a
magnet for advertisers offering services based on your particular
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.
cost of genetic sequencing is rapidly falling. Though a complete
sequence still goes for about a hundred thousand dollars, federal
grants -- and even a privately backed $10 million prize -- are pushing
down the cost. Some analysts believe that a complete genome will be
sequenced for just a thousand dollars in five years. For now, 23andMe
would rely just on key segments of your genome. Its service should
launch within a year.
First, important private information will move outside of your
control. If divulged, your genome and medical history can impact
critical decisions by prospective employers, insurers and even spouses.
Are you ready to entrust this deeply personal information to a company
that gets an "F" in privacy?
Second, this data will be a
goldmine, but only the corporations will get a cut. Researchers
currently spend millions trying to discover genes that correlate with
medical conditions. With thousands of genomes and health records to
compile and compare, 23andMe's technicians and statisticians will be in
a position to compete with more traditional researchers. The genetic
correlations they uncover will be patented, and remedies for associated
ailments sold at a premium.
For example, the test for genes
related to breast cancer costs $3,000 -- instead of a few hundred --
largely due to patents held by Myriad Genetics, a biotech company
founded by a publicly funded researcher.
Will you get a share of
the patents, and profits, on genes discovered by this service? You
relinquished any claim when you clicked "I accept" to a long, and
generally unread, term of agreement.
Finally, the exact
implications and potential inaccuracies of what we may learn are likely
to be lost. How might you or I react upon discovering that we have the
gene for a fatal, untreatable condition? How will the company make it
clear that such a gene may be merely a tendency to develop the disease?
What if a father learns that he is not genetically related to his
child? What if these results are inaccurate?
discoveries can be difficult to process in isolation from a broader
medical context and counseling resources, a challenge that we are
already confronting with the rise of at-home genetic tests.
plans to offer recommendations to help form social groups based on the
aggregated information of thousands of users. This "Web 2.0" model has
worked well for Amazon and MySpace. But in its race to transform the
falling price of genetic sequencing into a dubious consumer product,
the company fails to realize that your medical history and personal
genome are fundamentally different than your reading habits, and
"patients" are not synonymous with "consumers."
In the end, the
underlying view of Google and 23andMe doesn't depart significantly from
traditional Silicon Valley culture: that we can depend on technology to
solve the world's social problems. But given Google's privacy record,
Big Biotech's aggressive patenting of the human genome, and the
importance of our medical and genetic information, we should think
twice about transferring this model to health care. Contrary to Dyson's
claim, this future is not inevitable.
This site contains copyrighted material the use of which has not always
been specifically authorized by the copyright owner. We are making such
material available in our efforts to advance understanding of
biotechnology and public policy issues. We believe this constitutes a
'fair use' of any such copyrighted material as provided for in section
107 of the US Copyright Law. In accordance with Title 17 U.S.C. Section
107, the material on this site is distributed without profit to those
who have expressed a prior interest in receiving the included
information for research and educational purposes. For more information
go to: http://www.law.cornell.edu/uscode/17/107.shtml. If you wish to use
copyrighted material from this site for purposes of your own that go
beyond 'fair use', you must obtain permission from the copyright owner.