California Public Health Bureaucrats Attack Your Genetic Liberty


California public health bureaucrats think that you are too stupid to handle your own genetic information. So they have sent cease and desist letters to 13 consumer genetic testing firms telling them that they can't do business with California residents. New York bureaucrats have been doing the same thing. The new consumer genetic screening companies argue that they are not making medical diagnoses, but offering a service which educates consumers about various genetic risks they may have.

Princeton biologist Lee Silver, who had his genes scanned by one of the companies—23andMe—being told to cease and desist, explains:

According to the California health department, it's dangerous for me to see this information about myself without a doctor's permission. Does this make any sense at all? I can tell you that anyone willing to spend $1,000 for a file containing 500,000 lines with a bunch of letters and numbers [like those shown in his blog post] knows more about the genetic meanings of those characters than 99.9% of the doctors in this country….

This is a boutique product being sold to individuals who are simply curious about their heritage and their predispositions to certain behaviors and other traits. As 23andMe makes perfectly clear, "This service is for research and educational use only." If you are concerned about certain results and you bring the information to your doctor to consider some sort of treatment, what's wrong with that? And if you decide to treat yourself . . . well that's exactly what millions of people do every day with dietary supplements after receiving bogus diagnoses on radio and TV, and no one stops them.

But the thing that really angers me about Karen Nickel and her colleagues in California is that she really doesn't understand what she is trying to regulate when she questions the "accuracy" of the product. The DNA information that the company gives you is more than 99.9% accurate (I've assessed it myself). Some of these DNA variants can provide probabilistic assessments of your risk to certain diseases (which you can look up on the internet). Those assessments—whatever they are—are a hell of lot more "accurate" than the stuff routinely passed through the mass media. I think that the real reason Karen is so scared-to-death is that the new era of private genetic tests will almost certainly destroy a worldview (that she and others cling to) in which genes don't matter at all. And so like the Pope in Galileo's time, she wants to stop the telescopes from peering into our own bodies, at our own molecules.

I also had 23andMe scan my genes for an upcoming article for reason in which I will reveal all of my known genetic flaws and explain why those revelations don't matter. The nifty consumer interface supplied by 23andMe is actually very easy to understand and use. Among other things, the biomedical literature suggests that I have some genetic variations that confer slightly lower risk than average of esophageal cancer and heart attack and moderately higher risk of atrial fibrillation. In addition, the family legend about Cherokee ancestors is bogus, though the mitochondrial DNA I received from my mother apparently descended from a woman who entered Europe about 40,000 years ago (and perhaps helped kill off the Neanderthals).

Silver is correct when he writes:

And if you really are scared to death by the results of such a test, no one is forcing you to do it!

In the meantime, some of the consumer genomics companies are pushing back. If it turns out that ancient 20th century laws actually empower regulators to prevent consumer access to this information, California and New York legislators should immediately vote to overturn these regulations.