Amy Harmon
The New York Times
4/23/2010
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…
…Courts have ruled that individuals do not have a property right to their cells once they are taken in the course of medical care, but they do, under federal guidelines, have a right to know how they will be used. Complicating matters is the increasing impossibility of ensuring that DNA data can remain anonymous. Do participants need to be told that their privacy cannot be guaranteed? Can “blanket” consent up front do the trick, or is even that misleading because researchers can’t adequately describe the scope of studies they have yet to design? Is it O.K. to use DNA collected for heart research to look for genetic associations with intelligence, mental illness, racial differences?…
The article continues at NYT
H/T Instapundit
