Misha Angrist has written a strong guest post at Daniel MacArthur’s “Genetic Future”, taking a clear stand in favor of disclosure of genetic information from research studies. In response to the argument that full access to genetic information might “disturb” people:
If you told me I had an inoperable tumor, dont you think that would mess with my head? In the old days, doctors wouldnt tell their patients such things (I know, I knowyoure not my doctor). But anyway, who the hell are you to decide what might or might not mess with my head? How do you know I wont be more upset if you DONT tell me? And why would it jeopardize my ability to get insurance? Because Im only asking you to disclose it to ME, not to append it to my medical record or my Facebook page. Your consent form says you will take all kinds of steps to keep my information confidential, but that it might be examined by the FDA, the NIH, etc. Sothat means it would be okay for some bureaucrat to peruse it but not me?
Well, of course. Bureaucrats mind your own business so you don’t have to!