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Obama Admin Wants To Crack Down On Genome Biz
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March 11, 2011, 01:54 AM
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At GNXP, Razib writes:
In the very near future you may be forced to go through a "professional" to get access to your genetic information. Professionals who will be well paid to "interpret" a complex morass of statistical data which they barely comprehend. Let`s be real here: someone who regularly reads this blog (or Dr. Daniel MacArthur or Misha`s blog) knows much more about genomics than 99% of medical doctors. And yet someone reading this blog does not have the guild certification in the eyes of the government to "appropriately" understand their own genetic information. Someone reading this blog will have to pay, either out of pocket, or through insurance, someone else for access to their own information. Let me repeat: the government and professional guilds which exist to defend the financial interests of their members are proposing that they arbitrate what you can know about your genome. A friend with a background in genomics emailed me today: "If they succeed in ramming this through, then you will not be able to access your own damn genome without a doctor standing over your shoulder." That is my fear. Is it your fear? Do you care? In the medium term this is all irrelevant. Sequencing will be so cheap that it will be impossible for the government and well-connected self-interested parties to prevent you from gaining access to your own genetic information. Until then, they will slow progress and the potential utility of this business. Additionally, this sector will flee the United States and go offshore, where regulatory regimes are not so strict. BGI should give glowing letters of thanks to Jeffrey Shuren and the A.M.A.! This is a power play where big organizations, the government, corporations, and professional guilds, are attempting to squelch the freedom of the consumer to further their own interests, and also strangle a nascent economic sector of start-ups as a side effect.
At this point, as far as I can tell, getting your overall genome scanned is mostly for hobbyists, such as people interested in their genealogies. Scanning technology has gotten much, much cheaper, but it turns out that so many genes influence most of the traits we`re highly interested in that most of the medical advice flowing from findings that your genome makes you, say, 3% more likely to have a heart attack than the average person is stuff like: Quit smoking and get more exercise!

Eventually, this stuff might be highly medically useful, but it will take a lot more hobbyists having their genomes scanned to figure out what all those genes do and how they interact. As in any business, especially a new one, there are some scamsters in the personal genomics business, but they can be dealt with under laws against scams in general. Imposing onerous medical regulations on this fun little industry  will just slow the growth of genetic knowledge and be a boon for the economies of less regulated Asian countries that welcome American personal genomics firms.