Saffo on DNA Privacy

The Institute for the Future’s Paul Saffo has written an op-ed in the Washington Post addressing biometric technology and its discontents.  He also takes a quick look at some of the future problems surrounding DNA and privacy:

"…DNA is the gold standard of biometrics, but even DNA starts to look
like fool’s gold under close inspection. With a bit of discipline, one
can keep a card safe or a PIN secret, but if your DNA becomes your
identity, you are sharing your secret with the world every time you
sneeze or touch something. The novelist Scott Turow has already written
about
a hapless sap framed for a murder by an angry spouse who spreads
his DNA at the scene of a killing.

The potential for DNA identity theft is enough to make us all wear a
gauze mask and keep our hands in our pockets. DNA can of course be
easily copied — after all, its architecture is designed for
duplication — but that is the least of its problems. Unlike a credit
card number, DNA can’t be retired and swapped for a new sequence if it
falls into the hands of crooks or snoops. Once your DNA identity is
stolen, you live with the consequences forever.

This hasn’t stopped innovators from using DNA as an indicator of
authenticity. The artist Thomas Kinkade signs his most valuable
paintings with an ink containing a bit of his DNA. (He calls it a
"forgery-proof DNA Matrix signature.") We don’t know how much of Tom is
really in his paintings, but perhaps it’s enough for forgers to
duplicate the ink, as well as the distinctive brush strokes.

The biggest problem with DNA is that it says so much more about us
than an arbitrary serial number does. Give up your Social Security
number and a stranger can inspect your credit rating. But surrender
your DNA and a snoop can discover your innermost genetic secrets –
your ancestry, genetic defects and predispositions to certain diseases.
Of course we will have strong genetic privacy laws, but those laws will
allow consumers to "voluntarily" surrender their information in the
course of applying for work or pleading for health care. A genetic
marketplace not unlike today’s consumer information business will
emerge, swarming with health insurers attempting to prune out risky
individuals, drug companies seeking customers and employers managing
potential worker injury liability.

Faced with this prospect, any sensible privacy maven would conclude
that DNA is too dangerous to collect, much less use for a task as
unimportant as turning on a laptop or working a cash machine. But
society will not be able to resist its use. The pharmaceutical industry
will need our DNA to concoct customized wonder drugs that will fix
everything from high cholesterol to halitosis. And crime fighters will
make giving DNA information part of our civic duty and national
security. Once they start collecting, the temptation to use it for
other purposes will be too great…"

Paul Saffo, "A Trail of DNA and Data" Washington Post, April 3, 2005.

Check out the IFTF’s blog Future Now.

Upcoming Panel Discussion on DTC Genetics

The Genetics and Public Policy Center at John Hopkins has put together a panel discussion of direct to consumer (DTC) genetic testing to be held April 19, in Washington D.C..  They haven’t put up anything on their website yet, but here a description of the event from their email:

"One of the most immediate payoffs of sequencing the human genome is
the ability to use a growing number of genetic tests to diagnose an
existing condition or to test for one’s risk of disease. Currently,
more than 800 clinical tests are available for conditions such as
hereditary breast cancer, Parkinson disease, Huntington disease,
Tay-Sachs disease and cystic fibrosis. Until relatively recently, one
could only be tested by going to the doctor.

But now, some genetic testing companies are beginning to sell
these tests directly to consumers, eliminating the need to go to a
doctor’s office. Test results are made available online, in the privacy
of one’s own home. One company sells an at-home genetic test for the
genetic predisposition to addiction; another company sells at-home
genetic tests for infertility. Will at-home infertility tests provide
useful genetic information in a private, non-threatening way? Or will
these tests take advantage of people desperately seeking answers to
their infertility?

Gene test companies and some consumer groups hope to empower
individuals by providing direct access to genetic information. Other
consumer advocates worry that people may waste their money on tests
that have not yet been proven reliable or accurate. Health advocates
are concerned that consumers may make poor health decisions based on
test results and without benefit of genetic counseling or other medical
advice.

To explore the commercial, legal, medical and ethical issues raised by
direct-to-consumer marketing of genetic tests, the Genetics &
Public Policy Center at Johns Hopkins University will convene a public
meeting to hear from industry spokespersons, ethicists, physicians and
policy analysts."

The panelist are:

Telegenetics

"In the era of postgenomic medicine, the provision of genetics testing, counseling, and associated services is becoming a critical part of many patient encounters.  Innovation in the profession related to the delivery of services, especially with the utilization of distance technologies such as telemedicine, will be essential to providing genetics services to the population. Telemedicine is one of the dimensions of “e-health,” defined broadly as the use of advanced information technologies to improve health care delivery and education. This concept refers to a fundamental redesign of health care processes based on the use and integration of electronic communication at all levels. Telemedicine services will likely progress to include Internet- enabled consultations, leading to more geographic freedom for the patients instead of being restricted to the fixed set of sites within a specific delivery network. E-health leads to patient empowerment, which describes the transition from a passive role where the patient is the recipient of care services to an active role where the patient is informed, has choices, and is involved in the decision-making process."

J. Mitchell and George Demiris. "Telegenetics: The next phase in the provision of genetics services?" Genetics in Medicine, January 2005, p.1-2.

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