genomeboy.com

Dan Vorhaus has written his usual cogent and insightful review of the issues raised by Amy Harmon’s piece on the Havasupai tribe and its settlement with Arizona State University. In my view, the core of the matter is fairly simple:

“I’m not against scientific research,” said Carletta Tilousi, 39, a member of the Havasupai tribal council. “I just want it to be done right. They used our blood for all these studies, people got degrees and grants, and they never asked our permission.” [emphasis added]

If, as researchers, we can’t be bothered to 1) tell research participants what they’re getting into insofar as we know; 2) respect their cultural beliefs; 3) go back to them if our plans change and ask for their consent again; and 4) share with them what we find and what we think it means in a timely and ongoing fashion, then we will find human subjects increasingly hard to come by…and increasingly litigious.