Randall Parker is drawing attention to a very important issue that merits the attention of all of us concerned about civil liberties and basic economices liberties. Starting last year, the FDA has begun a push to regulate direct-to-consumer genetic tests. Michael Lee has observed that the FDA has not been entirely above-board in making the case for regulation. And Razib Khan explains the danger of a regulatory approach that forces credentialed gatekeepers between you and your 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?

Alex Tabarrok offered a case along these lines last year. As Razib goes on to explain in his, the cost of sequencing is plummeting, and this power play will prove ineffective as firms offering direct-to-consumer genetic tests move offshore. That, of course, means that a still-evolving industry will take root outside of the United States.

I strongly believe that all of us should take greater ownership of our physical well-being. The culture of modern medicine is not the kind of data-driven, transparent culture we need to make progress on combating age-related diseases, obesity, and other maladies associated with relative affluence. The idea of the Quantified Self represents a change for the better. We’ve already seen an explosion in the number of technological tools used to understand how our bodies work and how they’re changing over time in response to various external stimuli, and the Quantified Self movement is still in its infancy. Wide access to genetic information, including crude genetic information, is crucial to making further progress. We can’t let self-interested groups that want to keep us in the dark win the day.

Randall has offered further testimonials, including a letter from the renowned genetic anthropologist Henry Harpending:

The AMA submission has two main themes. The first is that citizens are unable to understand the risks and predicted outcomes that might be reported and that experts are vital to provide guidance. My own experience is that I am perfectly capable of finding empirical risks from current literature, I expect I can do a much better and more thorough job than my personal physician, and even my teenage son can do it with no trouble. My own experience, again, is that only about 1 in 5 medical students know what Bayes’ Theorem is.
The second theme is that knowledge of potentially medically relevant genotypes can do some unspecified harm to customers. I have spent a total of six or so years on university IRBs, and this kind of worry is ever present. While there is much public loose talk about psychological harm and the like, within the committee room we all understand that the practice of witholding any data from subjects about themselves is nothing but protection from lawyers. I am perfectly free to refuse to participate in research and in clinical trials but I am not free to refuse to participate in federal censorship of knowledge of my own genotype.
I would urge you to keep freedom of information for consumers at the center of the table when you discuss regulation of the DTC genetic testing industry. [Emphasis added]

Yes, there are people who will overinterpret or misinterpret the results of DTC genetic tests. But at best, that would justify a warning label, as Alex Tabarrok argues:

The ability of genetic tests to predict diseases is currently limited; if the FDA were simply to require firms to acknowledge this point, say with a clear statement of probabilities, that would be one thing (although this task is better met by the FTC under advertising regulation). But the FDA is brazenly overreaching in trying to regulate genetic tests as medical devices. First, there is no question that these tests are safe–safer than brushing your teeth!–and also effective in identifying genetic markers. Thus, there is no medical reason whatsoever for regulation. [Emphasis added]

Don’t let the FDA get away with this move. As you guys know, I am not the type to get ornery at the drop of a hat, and I do believe that the FDA officials behind this push are misguided rather than sinister. But either way, this is a really, really bad idea.

Razib and some of his fellow bloggers are putting together a small site called My Genome My Right that’s trying to bring these issues to a wider audience. If you’re a graphic designer or a web developer who cares about the freedom to access your own genetic information, I hope you’ll check it out and offer your assistance.