Just yesterday, the state of Arizona settled and indemnity claim by the Havasupai Indians. Blood samples had been collected putatively for the study of genetic factors that might be predisposing the tribe to diabetes. But the researchers also then searched for genes affecting psychiatric disorders. They had informed consent for the former, but apparently not for the latter.
Of course, the researchers, and other scientists quoted in the story, claimed innocence and that yes, they should be allowed to use DNA for whatever.
Abuse of society by scientists or any other elite starts step by step with this kind of self-important hubris. It is entirely right to stifle it.
This relates directly to our post yesterday about the Yanomami bloods stored in our freezer, We think that the Yanomami were given a broad explanation of the investigators' intent, because in regard to genes, at least, there wasn't anything specific to look at besides variation. So the use of their samples was for the stated purpose. The issue of distributing samples to other investigators has changed dramatically since then.
But this is not the case with the Havasupai samples. Modern informed consent was in place.
George Church, running the Personal Genome Project may have the unfortunate best and right idea. His volunteers essentially sign away all rights, and acknowledge that there is no way to protect against any use of the samples. No confidentiality guarantees. Nothing.
This may be realistic, and may spread throughout the biomedical research community, that body of noble selfless citizens who simply want to do the experiments they want to do (something we've seen before in history). But it seems unlikely to stick. Sooner or later some use of DNA will be tried that will cause discrimination or something, and the courts will probably decide that the informed consent wasn't informed enough. What if, for example, an investigator some day clones an individual from whom a blood sample was taken? Frankenstein stories are easy to imagine. That doesn't make them true or even likely, but it does show how sensitive and dodgy the issues are, even for scientists with the best of intent.