March 10, 2011
John Hawks A Genetic Libertarian

Many genetics bloggers are responding to the very real threat of stifling US FDA regulations of the genetics direct-to-consumer (DTC) testing industry. Researcher John Hawks proclaims himself a genetic libertarian. So am I. How about you?

Much news coming out of the FDA public meeting on direct-to-consumer (DTC) genetics. Dan Vorhaus was at the proceedings and reports on them ("Looking Ahead After the FDA’s DTC Meeting").

I believe that I have a fundamental right to my own biological information. What I mean is that, if anybody has biological information about me, I should be able to access and use it. Additionally, I think it is immoral for anyone to charge me excessive rates to access my own information. So that's where I'm coming from. I'm a genetic libertarian.

As Razib Khan has pointed out, it is not credible to argue that medical doctors know the details of genetic research on humans. The threat of FDA regulation of DTC genetics testing is all about the FDA empowering themselves and the medical doctors. It is not that they think we can't handle the truth. It is more likely they do not want to allow us to handle the truth. The idea we are going to stress out from genetic testing results does not stand up to scrutiny. People who get themselves genetically tested are not psychologically harmed by the results. People really can handle the truth.

Joe Pickrell says genetic research can be accelerated by people who have a personal interest in discoveries about diseases or traits that they or people close to them have.

You can think what you want about the value of the research done to date by 23andme [1], but in my mind, there’s one simple reason why the sorts of participant-driven research they’re doing can only be a good thing: all research is driven by curiosity, and the people most curious about a disease or trait are those who have it. While people may think of the academic research community as a machine with endless resources and limitless motivation, it’s not. People work on things they think are interesting; they sometimes follow “trendy” topics, or move into fields with more grant money, or get bored of a given problem and move on. So if the research in the trait you’re most interested in isn’t moving fast enough for you, well, tough luck.

We already have examples of individuals who have spearheaded discoveries for genetic diseases they or family members suffered from. The FDA's regulatory ambitions for DTC genetic testing are an obstacle for this sort of research.

Recall that one of the key players in the discovery of the gene for Huntington’s disease was a foundation started by a man whose wife had the disease (startlingly, the current president of the foundation apparently accused DTC companies of “raping” the human genome during the present FDA hearing). Recall also that James Lupski, curious about the cause of his Charcot-Marie-Tooth disease, simply sequenced his own genome to find it.

In the comments of Joe Pickrell's post "Nick" says the ability to contribute to the growth of genetic knowledge is one reason he chose to get himself tested by 23andme.

As a recent 23andme customer I think it’s fair to say that this aspect of the the 23andWe community was probably the biggest single factor in my decision to submit a sample for testing. I’m realistic to know that the current state of genomics knowledge can at best give indications of marginal risks for the various health conditions, and the fact that my results show a large set of common alleles (‘common things are common’ is one of the medical doctrines that applies equally well here) adds to the feeling that the ‘traits’ data, and the contribution to a developing field of science is at least as much part of the value of 23andme’s product as the medical report.

As long as people are free to get themselves genetically tested and genetically sequenced volunteer efforts to crowdsource genetic information to discover causes of diseases and traits can make a substantial and rapidly growing contribution to the rate of genetic discovery. The FDA is an obstacle to progress. It should get out of the way.

Share |      Randall Parker, 2011 March 10 10:28 PM  Policy Medical


Comments
Sycamore said at March 11, 2011 2:41 PM:

People can always go consult a doctor after they get the results, if they actually want to. Is there some reason they won't they go voluntarily if they are worried about something?

"Gosh, I'm not sure what these results mean - I guess I could ask a professional about it... but I'm just gonna fuckin' kill myself."

Kind of like that time when I had a suspicious dark spot on my hand, but no clue how to evaluate it, so I decided to suck a tailpipe - no, wait, that's right, actually I went to the doctor.

Since a lot of people off themselves or at least spend a despondent year over star-crossed love, maybe we should get government approval before going on a date - plus, more importantly, before kissing the girl, they tend to get real emotional. Government can debar us from dating matches with markers which, according to research, correspond to a high risk of unhappy outcomes.

This is a money grab by people who are already wealthy and well-born (smart-born). This particular grab is already completed in Russia, but what exactly do you expect from Russia? Glorious art, charming souls, and endless rent-seekng and gangsterism, of course, if you're paying any attention whatsoever.

Randall Parker said at March 11, 2011 8:26 PM:

Sycamore,

Yes, to be consistent if we are going to use the risk that might do various things to hurt or kill ourselves then we need experts deciding what we eat, drink, or even read. Look at all the people getting killed in cars. We can't be trusted to do that. But if we are really that inept and dangerous then why are we even given a right to vote? Why not let only credentialed experts choose leaders?

bmack500 said at March 11, 2011 10:17 PM:

If by "Genetic Libertarian" you mean simply that we should have access to these tests unhindered by the government, the absolutely we should. However, if you mean they can sell us worthless tests that are frequently error prone with no oversight whatsoever, then no.
I'd simply like to know that what I purchase does what it says it does, and accurately. I don't think that's too much to ask, is it?

PacRim Jim said at March 12, 2011 11:02 AM:

Apparently the FDA is unaware that hoi polloi already know that they are mortal.
D.C. seems to be populated by highly educated people lacking common sense.

Kent Anthony said at February 11, 2015 6:56 AM:

The last line "The FDA is an obstacle to progress. It should get out of the way." looks the bottom line to me!

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