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December 3, 2013

The FDA Attacks Your Right to Know Your Genes


The FDA has done something evil. I responded by telling Congress to make the FDA advisory rather than mandatory. has a campaign for this. The hardwired message reads…

Make the FDA advisory, not mandatory.

You can copy or edit my sample comments…

I hold you personally responsible for everything the FDA does. Where else could I place this responsibility, given that I have no representation at the FDA? Here’s the latest example of criminality you permitted…

The FDA has prohibited 23andMe from offering its genetic testing service.

This is wrong in every possible way. Please be clear about this…

My genes belong to me. I have an inalienable right to sequence them whenever I damn well please, and to hire whomever I choose to perform that service. It's up to me how much I know about my own genetics. This is my choice, not yours.

But you and the FDA dare to presume otherwise. Not only have you denied me access to this service, but you have also stolen the livelihood of the people who work for 23and Me. This is theft. This is criminal. This is evil. But it gets worse…

Retarding this kind of service impedes medical progress. The future lies with personalized medicine, based on genetic testing. The FDA is stuck in the past, relying on statistical guesses that pretend there is no genetic difference between individuals. The FDA blocks the road that leads to a bright future.

I would think that both Congress and the FDA would have learned the lesson of the AIDS crisis. There is only one reason we have effective treatments for AIDS today – because intense public pressure forced the FDA to stand aside while scientists and companies brought these treatments to market. Please stop being stupid — the approach that worked in the case of AIDS needs to be the standard policy.

Make the FDA advisory, not mandatory. If Congress can't actually step up and represent us — if such binding decisions can be made by unelected bureaucrats — then we're left to wonder, why should Congress even exist?


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