In the courts: informed consent and invasion of privacy
Paul Davenport of the Associated Press reports:
An Arizona appeals court panel ruled Friday that the Havasupai Indian tribe can proceed with a lawsuit that claims university researchers misused blood samples taken from tribal members.
Overturning a judge’s 2007 dismissal of the case, a split Arizona Court of Appeals panel said the Havasupai and other plaintiffs had provided enough information to go to trial or at least enough to go forward in trial court pending further proceedings.
The northern Arizona tribe, whose isolated village lies deep in a gorge off the Grand Canyon, claims Arizona State University and University of Arizona researchers misused blood samples taken from more than 200 tribal members for diabetes research in the 1990s by also using it for research into schizophrenia, inbreeding and ancient population migration.
The tribe claims the additional research was conducted without its permission and constituted an invasion of privacy. As a result, the tribe says, some members now fear seeking medical attention.
Howard Fischer of Capitol Media Services focuses on another aspect of the lawsuit, namely that the researchers used the blood samples — allegedly without authorization — to conduct genetic tests that might seriously undermine the tribe’s core religious beliefs about their origin.
Although the latter is not an insignificant claim, I somewhat naturally was drawn to the issue of possible violation of informed consent and the privacy implications. The appellate opinion reversing dismissal of the lawsuit can be found here. If anyone has a copy of the informed consent form tribal members signed, I would be curious to see it.[headline typo corrected 12-04-08]