‘Informed Consent’ and the Ethics of DNA Research

From NYT:

The cultural gap between the impoverished Havasupai Indians who view their blood as sacred and the Arizona State University researchers who helicoptered in to their Grand Canyon home to collect it was at the heart of a lawsuit over the scope of a genetic study that ended last week with a settlement for the tribe.

But the case, scientists and bioethicists said, serves as a cautionary tale about the equally significant gap between scientists and all research subjects, who often seem to hail from different cultures even when the surface differences are less apparent.

As troubling questions, some involving other lawsuits, have surfaced recently among a range of research subjects who have learned that their genetic material is being used in ways they weren’t consulted about, scientists are debating how to better apply the principle of “informed consent” to large-scale genetic research. At stake, they say, is the success of such research, which relies on voluntary participation by increasingly large numbers of human subjects.

More here. This follows a previous story about a legal victory by the Havasupai Indians, who were compensated and returned their blood samples on grounds that they had been misled on how the samples were going to be used. They were under the impression that their blood was being used to study diabetes, and were quite upset when they found it had also been used to study schizophrenia and to trace their ancestry to a past that contradicted their own ancestral stories.

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