The US Food and Drug Administration has told 23andme to stop selling personal genetic testing kits directly to consumers. Alex Tabarrok, an economist who has done work in medical policy, takes up the issue in an excellent post hitting many relevant notes.
At the same time that the NSA is secretly and illegally obtaining information about Americans the FDA is making it illegal for Americans to obtain information about themselves.
Knowledge about ourselves is dangerous. The FDA fears we might make bad medical decisions with this knowledge. Yes, sure. But America is (or at least is supposed to be) a free society. That is one of the risks of a free society.
One of the FDA's fears: women will get double masectomies based on genetic testing results. Well, women might also get double masectomies based on hearing Angelina Jolie describing why she decided to do the same. People will respond to information they hear in all sorts of ways. They'll go on diets, ask their doctors for specific drugs, ask for more medical tests. Hey, people do things. Their doctors are free to try to persuade them away from their ideas or even refuse to carry out a treatment.
But this is not only a question of individual freedom. Direct-To-Consumer (DTC) genetic testing promises a very large utilitarian benefit even to people who do not get tested. Alex gets to the absolute crux of the matter of why you should care deeply about this outrage: FDA obstacles in the way of the masses getting themselves genetically tested will greatly slow the rate of progress in figuring out what the genetic variants mean.
The FDA also has the relationship between testing and clinical validity ass-backward. The FDA wants to say no to testing until clinical validity is established but we are never going to discover clinical validity until we have mass testing.
We can speed up the rate of advance of genetic testing by getting ourselves genetically tested and then volunteering to medical researchers both medical information and our testing results. 23andme has already published research papers made possible by its customers.
Doctors and regulatory agencies used to be priesthoods who controlled our access to medical information about ourselves. There was a time when doctors would even withhold diagnoses for fatal diseases. We've come a long way toward openness and greater self knowledge. The FDA is fighting to maintain the ancien regime where they exercised much greater control over what we can know about ourselves. They can deny us a faster rate of medical research advance if they get away with it.
|Share |||Randall Parker, 2013 November 26 08:22 PM|