transparency in government starts with personal knowledge

The extent of a person’s access to her or his own genetic information is currently under consideration in the U.S. Congress. Genetic information is uniquely personal. A person’s genetic information, along with that person’s life history, determines who that person is.  Surely good government of personal information gives a person, with respect to his or her own genetic information, equal or greater access than anyone else has or any organization or government has.  Know thyself is the first, ancient principle of good government.

The video below shows the FDA’s Jeffrey Shuren apparently lying to Congress about the activities of direct-to-consumer genetic information companies.  The video was anonymously created and has been distributed by the FDA Blog.  Shuren’s prepared Congressional testimony provides some context for his statements on the video.  Shuren’s statements shown in the video apparently came in response to Congresspersons’ questions.  Here’s further context for the video and the issues of concern.

The video is obviously tendentious.  So too may have been the Congressional hearing. If the sort of proceeding depicted in the video is acceptable to Congress, then the quality of our democratic government is highly questionable.

The crux of the problem seems to be at the mid-range of government. The FDA’s primary procedural clients are large pharmaceutical companies. The FDA could serve the public interest by helping persons more easily get access to their own personal genetic information. But the FDA instead appears to be trying to shut down a potentially very significant area of the information economy. Both the public and Congress need to act to ensure that the FDA serves the general public, not corporate clients.

Gene Expression’s Razib Khan is acting to secure self-knowledge. You should be, too.

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