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Don’t let physicians have a gate-keeping role between you and your genetic information

Last week there was an excellent piece by Daniel MacArthur in Wired on how the doctors’ lobby is trying to asert its monopoly on genetic testing (hat tip John Hawks).

The American Medical Association has written to the FDA demanding a gate-keeping role in direct-to-consumer genetic testing:

We urge the Panel to offer clear findings and recommendations that genetic testing, except under the most limited circumstances, should be carried out under the personal supervision of a qualified health care professional.

As MacArthur translates:

In other words, the AMA is seeking to maintain its members’ traditional monopoly over the interpretation of genetic information – and they expect regulators to act as their enforcers, beating down the upstart DTC genomics companies who have wandered onto their sacred turf.

This is, of course, an absurd, desperate demand. If doctors think that people should consult them about their genomes, they shouldn’t run crying to the regulators to provide the necessary force; instead, they need to convince the public that a medical consultation adds genuine value to their genomic information. Unfortunately for the AMA, right now it’s far from clear that this is true: in many cases, DTC genomics customers are far better equipped to interpret their results than their doctors are.

And remarkably, the doctors even admit that they do not know enough to do the job they are demanding they be given:

The number of genetic tests available directly to consumers has proliferated rapidly, and several studies have reported that physicians find it difficult to keep up with the pace of genetic technology.

This is yet another example of a patronising priesthood who think the world is a top-down place. I am all in favour of getting physicians’ advice on how to interpret genetic test — and the web, not the local surgery, is the place to find it, especially from DNA Direct — but the itch to make something compulsory is wholly wrong.

My reaction to reading this article was to do something I have been putting off for months. I went straight to the 23andme website and ordered a DNA test kit. Before they make me have to go through a doctor.

As Razib Khan puts it at Discover:

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


By Matt Ridley | Tagged:  general