Run as fast as you can!

By Razib Khan | February 24, 2011 5:31 pm

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.

CATEGORIZED UNDER: Genetics, Genomics, Personal Genomics
MORE ABOUT: Personal genomics
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Comments (6)

  1. omar

    I agree that the average medical practitioner is LESS prepared to deal with genomic questions than the average biology undergrad in a reasonable college. For the profession (stacked as it is with people trained in the pre-genomic era) to claim special knowledge in this case is rather bold….But its likely that regulation will happen. Blood and body fluid tests of all sorts are regulated already so why would genetic tests escape regulation? Regulation will make more money for testing companies (some of them) by making this an overpriced medical test instead of a competitive open market technology. And of course, its a revenue stream for medical professionals like us who will interpret the tests. Technology is changing so fast that this particular industry may yet escape lightly, but dont count out the AMA (I am not a member, btw).

  2. dave chamberlin

    Just another example of blogs doing some top notch reporting catching a special interest group trying to get away with, well, self serving shenanigans that are not in the publics best interest. The AMA may attempt to claim ownership to genetic information but it will never happen. Electronic information is impossible to contain. You can never herd cats, win a drug war after the demand and profit margin are there, or control the internet.

  3. Keith

    “Blood and body fluid tests of all sorts are regulated already so why would genetic tests escape regulation?”
    You are right, but can we at least consider the idea of unregulating blood and body fluid tests instead? Can we try to go the other way, instead of thinking of regulation as a one-way ratchet?

  4. omar

    I am with you. I have no problem with less regulation of other tests as well. I am just saying, its already the norm, so it may be relatively easy to extend it to this field (seeing that is how bureaucracies tend to work).
    Dave, you cannot win a drug war, but that does not stop the government from fighting one with great vigor. They can also attempt to regulate this information and fail, but still create significant hurdles and raise the price (as they have successfully raised the price of drugs).

  5. Alan

    Did you know that Johnson and Johnson recently invested 9M in 23andme. Why did J&J do that? Who has the most power: the FDA, AMA, or the drug industry?

    The drug industry is a major funder of the FDA. Maybe if the drug Industry wants DTC to survive then they may survive, despite the FDA or AMA?

    The AMA should be more concerned with the fact that the ~fourth leading cause of death in the USA is from prescription drugs (and the number of people permanently damaged is huge). And those package inserts are written in gibberish legalese, without any useful statistics. Shame on the AMA, FDA, pharmacies, and drug Industry.

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Gene Expression

This blog is about evolution, genetics, genomics and their interstices. Please beware that comments are aggressively moderated. Uncivil or churlish comments will likely get you banned immediately, so make any contribution count!

About Razib Khan

I have degrees in biology and biochemistry, a passion for genetics, history, and philosophy, and shrimp is my favorite food. In relation to nationality I'm a American Northwesterner, in politics I'm a reactionary, and as for religion I have none (I'm an atheist). If you want to know more, see the links at http://www.razib.com

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