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.
You can think what you want about the value of the research done to date by 23andme , 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|