Genetic testing disconnect grows

I’ve written before about the rapid growth of genetic testing companies that will test for genetic indicators of everything from paternity to 3 billion base full genome dumps, all for a price. And I reported last week on the study published in JAMA that about how unprepared physicians are to deal with genetic testing.

The tribulation continues with an article in the Washington Post this morning about all the companies getting in on the genetics boom and their attitudes about it.

…backers of these enterprises say they are pioneering nothing less
than a medical and cultural revolution. With each person who adds his
or her DNA to the companies’ high-security databases, they say, links
between specific gene variants, health conditions and behavioral traits
are getting documented, speeding discoveries about biology, identity
and destiny.

"We call it consumer-enabled research," said Linda Avey, co-founder of 23andMe, based in Mountain View, Calif. "It’s about changing the paradigm of how research is done."

A cultural revolution and revolution in research?! Pretty ambitious goals. But wait, there’s more.

It is also about self-discovery and a new kind of social networking, as
"members" — as some companies call them — learn about their DNA
details and share them with others.

"We envision a new type of community where people will come together
around specific genotypes, and these artificial barriers of country and
race will start to break down," said Anne Wojcicki, who with Avey
co-founded 23andMe. […]

"I think people will really get into it," said George Church, the Harvard
geneticist who co-founded Knome and founded the not-for-profit Personal
Genome Project, which will compare the genomes of 100,000 people
willing to make their DNA public. "I think this is going to connect
people clear around the world." […]

Wojcicki predicts that as members share information about their genes,
their health and their personalities — an irresistible option for many
in this age of electronic "friending" — the new enterprises will
revolutionize health care "the way YouTube revolutionized media."

"I call it the democratization of the genome," [Craig] Venter said.

There are all kinds of cautions and reasons to warn that expectations and promises in this area are overinflated…at least for now. But it seems to me that the warnings are not going to stop the process. The testers are not in the core of the traditional health system. They’re selling information, not giving treatment, so they’re not regulated. And people want to know. With doctors not up to speed there are lots of holes where entrepreneurs can offer service…and they will. In fact, it seems to me that this is indicative of a situation we’re going to see much more of: new medical and information technology pouring into society way before the traditional system of authorities and experts can cope with it. I think patients/consumers are going to be presented from here on out with enterprises offering many health-related devices and services that circumvent the traditional health care system. "Revolution" may not be such a stretch after all.


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