The Arizona Court of Appeals has reinstated a lawsuit filed by the Havasupai Indian Tribe against Arizona State University and the University of Arizona. A lower court had tossed out the case, but I have to agree with the appeals court. The case at least deserves a hearing.
The Havasupai Tribe allowed researchers to take blood samples from 200 tribe members to do research on diabetes. Diabetes is a serious disease in their tribe and in our country, and they were happy to be of help. But then the university researchers broke their word.
After completing the diabetes study, there was blood left over. They used that blood "for research into schizophrenia, inbreeding and ancient population migration." But they did this without asking permission of the Havasupai. The tribe says this was an invasion of their privacy, and now some members of the tribe are afraid to go to a doctor because they can't trust that their privacy will be respected.
I know if I give some bodily fluids to someone to be used for an agreed upon purpose, then I fully expect that is the ONLY purpose it will be used for. If there is some left over and someone would like to use it for another purpose, they'd better ask my permission. If they don't ask, then they'd better dispose of it properly, because they do not have my permission to do anything else.
There is nothing more personal or more private than our own bodies. When we allow access to our bodies, we must be able to trust those to whom we are giving access. The denial of the right to privacy regarding our own bodies could have serious consequences for our society. And if they can deny that right to the Havasupai, they can do it to anyone else.
The researchers said the blood was voluntarily donated and there was a legitimate public interest in data that advances disease research. They are wrong. If they wanted to use the blood for other purposes, they should have asked. By not asking, they broke their word and violated the privacy rights of the Havasupai.
Oh, that is heinous.
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