genomeboy.com

On the Media, arguably my favorite show on NPR, tackles direct-to-consumer personal genomics:

DAVID MAGNUS: Well, they have a right to that information, but that’s not the same as saying they have a right to get it in an unencumbered fashion.

BROOKE GLADSTONE: It is the same as saying that. Why should the medical establishment stop me from [getting] information about me?

DAVID MAGNUS: It’s about making sure that you understand and that there’s adequate informed consent for what you’re getting, so that we can avoid harm. In the story that the reporter wrote about cardiovascular disease, if because of his misunderstanding he starts thinking he doesn’t have to worry about his diet and his exercise and has a heart attack at a much younger age because he misunderstood that information - that is very clearly a direct harm that’s a function of the genetic testing.

BROOKE GLADSTONE: I understand the risk. I do. But the harm comes from the action he takes based on that information. The government, and companies, and all sorts of interests around the world frequently say that certain kinds of information could harm us because of the actions we could take, regardless of whether the information is true or false.

I’m afraid that, in the case of my own medical information, in which the only real victim is likely to be me, if I take ill-advised action, that if a physician says that he or she deems it unnecessary for me to take such a test, then I don’t get access to it.

DAVID MAGNUS: What we’re saying is not that you can’t get access to it but that you need to have a physician involved. If you get to the point where there’s generally understood standards and people start to understand the information pretty well, you start to have a clear understanding of what the harms are, you have a clear understanding of the efficacy of the tests for different traits, when you get to that point, that’s when you tend to allow things to go over the counter or direct to consumer. But you don’t start that way.

But who will decide exactly when “people start to understand the information pretty well?” Will it be doctors, most of whom probably think “SNP” is slang for a vasectomy? Or should it be bioethicists?