I am a biophysicist by training. I have a strong belief that people should be able to access the information in their own genomes, both from an ethical and a practical point of view. Ethically, I think the case is fairly clear-cut: what information more obviously belongs to you than your own genome? There seems to be no principled basis to argue that a third party must be involved to act as the gatekeeper for this information. Practically, as a scientist, I think it is of crucial importance to encourage the application of new technologies to biomedical innovation. There have been a number of important papers that have come out of "crowdsourcing" genomics -- look up the papers authored by the folks at 23 & me, for example. If these efforts are arbitrary shut down, I feel that a huge opportunity will have been lost, and the people that ultimately are harmed by this are patients that won't receive the benefits of this innovative research.To submit your own opinion, go here.
Sunday, May 01, 2011
Letter to the regulator
The FDA is apparently on the verge of issuing some harsh new regulations with regard to people's freedom to access their own genomic information. (For some appalling background into this, see here, here, and here.) Today is the last day for public comment on the issue. Here was my contribution:
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I submitted my opinion!
ReplyDeleteI don't have quite the backing that you do.
But I can think that people who are motivated by their own genetic problems and who have the brains to solve them will certainly passionately apply those brains to finding a solution, maybe better than one a big lab would find where passion is lacking... which may not be the most scientific rationale out there, but hell, if I were smart enough to look at my genes and understand them, I totally would-- who knows what you could learn about yourself to make yourself work better. Well, I said it more eloquently than that, I hope, on the submission.
Anyway, the FDA is kind of a pisser, IMO. I mean, they've done a great job with the obesity and diabetes epidemics, huh? Surely they know what they're doing. After all, the underestimated our vitamin D minimum needs by what, an order of magnitude?