As biomedical technologies get cheaper, it becomes easier for non-specialists to get access to them; as the technologies get "smarter," it becomes easier for non-specialists to use those them. We see this happening with devices such as inexpensive defibrillators, now standard issue on many airplanes, which are sufficiently automated to allow people with no medical knowledge to save the lives of heart attack victims in mid-air. This is pretty clearly a good thing. But we’re also now seeing this happen with genetic testing, and whether or not it’s for the good remains to be determined.
DNA
Direct is a San Francisco company founded by
Ryan
Phelan, who started the website which became WebMD. For
a couple hundred dollars, DNA Direct will send you a kit to
let you take a sample (typically a cheek swab) and send it
back for anonymous testing for genes predisposing you to a
variety disorders including, starting this week, breast
cancer. Counseling is included with the results, which are
delivered via the web. No information gets added to your
medical records, no insurance companies get notified. The
logic here is straightforward: fear of genetic
discrimination could make people avoid taking tests which
could help them make lifestyle choices to avoid potential
problems. Anonymous testing side-steps that problem neatly.
We know that genes are not destiny -- one's proteome,
one's environment, and one's behavior also have a great deal
of say in medical outcomes. But even if they aren't
predictive, they are suggestive. That's where good
counseling can be the most beneficial: understanding which
risk factors are meaningful, and which aren't. DNA Direct
claims to provide abundant information and counseling
resources; some people
remain fearful that any over-the-web intervention will
be insufficient. And divulging sufficient amounts of
information about one's life to make the counseling useful
undercuts the anonymity.
DNA Direct (and its inevitable competitors) is another
step towards the era of transparent physiology. It will soon
be possible to run a
full genetic scan of individuals quickly and inexpensively.
Down the road, we'll see individual
proteomes and
brain maps. In the not-too-distant future, you'll be
able to carry around a card (or whatever data storage medium
is in vogue) containing the component information of you.
While there are questions about precisely who would own that
data, the real unanswered question is more basic: what would
you do with it?
We are moving along quite nicely in the development of
data acquisition tools for the world around -- and inside --
us. The development of tools and systems for analyzing that
data, telling us what it all means, seems to be moving along
less swiftly. What results is not so much "information
overload," making it hard to find what you need, but
"information overwhelm," making it hard to figure out what's
important and what isn't. The real breakthrough with these
technologies will come not when it's easier and cheaper than
ever to accumulate the data, but when it's easy and
inexpensive to understand the data.
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