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 FDAs 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.
In the current proceedings, two issues have arisen of some interest. The first is a relative sideshow but has for good reasons absorbed much attention. Some public figures have adopted a deliberate strategy to portray DTC genomics companies, such as 23andMe, as parasites on the human genetic research otherwise conducted by academics and pharmaceutical companies. This assertion is obviously false – some DTC companies now involve thousands of participants in active research projects.
But more immediately important, there’s a video that effectively shows the “big lie” – Congressmen and an FDA official claiming that no research is done by DTC companies only two days after that very official participated in a meeting that highlighted this kind of research! It is incredible, and widely linked (see, for example, Razib’s post or Joe Pickrell’s post).
I’m not the fountain of information about this topic, but I do want to link and promote others with whom I mostly agree. Joe Pickrell takes a practical perspective: DTC testing is good for research, because there’s an awful lot of research that would never be done without it.
You can think what you want about the value of the research done to date by 23andme , but in my mind, theres one simple reason why the sorts of participant-driven research theyre 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, its 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 youre most interested in isnt moving fast enough for you, well, tough luck.
Some of my research on Neandertal genetics surely falls into that category, as does almost all genealogical research. The widespread availability of genomes is already leading to much research of anthropological interest.
Many of my readers will already have seen Razib’s post, “Your genes, your rights FDAs Jeffrey Shuren not a fan”. Working from the video, he tackles what I see as the second and more important issue: Whether the interpretation of genomes should be subject to regulation.
The online community needs to get organized. Were not as powerful as a million doctors and a Leviathan government, but we have right on our side. Theyre trying to take from us what is ours.
According to Vorhaus, some regulation is likely a foregone conclusion from the FDA. This is to be expected; it is the ordinary process of rent-seeking by the political class.