Since his move to Wired I swear that Dr. Daniel MacArthur has gotten a bit more pugnacious. In any case, today he has a post up which smacks-down the A.M.A.’s attempt to expand the long arm of its regulatory capture:
The American Medical Association has written a letter to the US Food and Drug Administration as part of the lead-up to the FDA’s meeting on direct-to-consumer (DTC) genetic testing next month. The tone is predictable: the medical establishment is outraged by the idea of people having access to their own genetic information without the supervision of its members, and they want the FDA to stop it….
Over the past six months I’ve gotten really into analyzing genotypes of friends & family. Sometimes I talk about this excitedly, and people worry about the “risks.” When I ask what risks they’re worried about, usually people offer the vague and content-free fear of “what you could find out.” First, if you have family information, that’s usually much more powerful than the “disease risk” estimates that these firms are giving you. In 99% of the cases, if that’s your primary concern it’s not worth the money. Second, if you’re terrified about what ancestry inference might tell you, probably you should see a shrink. You are what you are, and you’ve always been what you are. As a matter of common sense psychology, on the margin a change in self knowledge can have a big effect, but usually it is just informational icing on the cake.
I wouldn’t bet on any regulatory agency being able to clamp down on direct-to-consumer personal genomics for those who want to get it done at this point, though it is probably still possible if campaigners for F.U.D. get clever. If it’s banned in the United States no doubt the firms will move offshore (or new firms will crop up to fill the demand). Rather, it might have a dampening impact on the pace of innovation since there will be new impediments toward profitably. But here’s the important point, I’ve got the markers on several computers and in Gmail. Once the information is out, it’s out. There’s no way that the government can put the genie back in the bottle for those of us who have raced ahead of feared regulation. So run, just in case. Once you cross the threshold they can’t drag you back, no matter how powerful their lobbyists and marketers are.
Note: If you read this blog you know that I’m generally skeptical of the average person to interpret a mass of information. So in some ways F.U.D. pushers have a point. But, we live in a world of fad diets and all sorts of crazy movements. That’s a much bigger issue, and no one is pushing for regulation of that sort of thing.
Links to this Post
- Your genes are your own to test | The Rational Optimist… | March 3, 2011