[Infowarrior] - Google Wants to Track Your Medical History -- And Your Genome

[Richard Forno]

Google Wants to Track Your Medical History -- And Your Genome
By Jesse Reynolds, AlterNet
Posted on September 20, 2007, Printed on September 20, 2007
http://www.alternet.org/story/62847/

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 privacy."

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.

Having 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 medical
history.

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.

The 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.

So what's the problem?

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?

Such profound 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.

23andMe 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.

Jesse Reynolds is the director of the project on Biotechnology in the Public
Interest at the Center for Genetics and Society, a nonprofit advocacy
organization, and a contributor to its Biopolitical Times blog.
© 2007 Independent Media Institute. All rights reserved.
View this story online at: http://www.alternet.org/story/62847/