Amy Harmon of the New York Times has more on the settlement in the Havasupai case (covered here) and the ethical issues.
As part of her two stories, she reports:
“It is a gesture of respect to say, ‘We told you we wanted to do one thing, and we’d really like to do something else,’ ” said S. Malia Fullerton, assistant professor of bioethics at the University of Washington in Seattle.
and:
“Everyone wants to be open and transparent,” said Dr. David Karp, an associate professor of internal medicine at the University of Texas Southwestern Medical Center in Dallas, who has studied informed consent for DNA research. “The question is, how far do you have to go? Do you have to create some massive database of people’s wishes for their DNA specimens?”
Does anybody listen? If you listen to what members of the tribe said, they would not have consented to certain uses of their DNA because it violates their traditions and stories. If people are telling you that they would not consent had you asked them, then you do need to ask instead of trying to argue that it is (merely) a gesture of respect or optional.
The notion that researchers can substitute their judgment as to what people would have provided informed consent for is abhorrent to me. As in all aspects related to health, when we are talking about people volunteering for research, I firmly maintain that informed consent is needed — and yes, that means for all uses. I’ll also go further and say that a state has no inherent right to take all citizens’ DNA to use for research purposes. Private means “private.” Why is that so hard for some people to accept?