Seven years ago, the Havasupai Indians, who live amid the turquoise waterfalls and red cliffs miles deep in the Grand Canyon, issued a “banishment order” to keepemployees from setting foot on their reservation — an ancient punishment for what they regarded as a genetic-era betrayal.
Members of the tiny, isolated tribe had given DNA samples to university researchers starting in 1990, in the hope that they might provide genetic clues to the tribe’s devastating rate of diabetes. But they learned that their blood samples had been used to study many other things, including mental illness and theories of the tribe’s geographical origins that contradict their traditional stories.
4 thoughts on “‘Indian Tribe Wins Fight to Limit Research of its DNA’”
I read this, and went to my husband and ranted about the holy arrogance of scientists. The rant isn’t finished yet.
This part bothered me:
[Therese Markow, the geneticist, defended her actions as ethical. Those judging her otherwise, she suggested, failed to understand the fundamental nature of genetic research, where progress often occurs from studies that do not appear to bear directly on a particular disease.
“I was doing good science,” Dr. Markow, now a professor at the University of California, San Diego, said in a telephone interview.]
I guess for Dr. Markow, her concern was never for the welfare of the Havasupai people… only for her research and her “good science”. Sounds like the same kind of ethical standards that resulted in the Tuskegee syphilis experiment – “We’re going to do this scientific research because we can and we want to, regardless of cost/benefit to the subjects.”
Just a side note on one of the details. The whole phenom of “studying” societies and coming up with theories about “their” origins as opposed to using their oral histories as a starting point . . . . It was ironic that in your other post on colour-blindness, on the same page that Dr. Tynes’ research was referred to there was mention of new research by Argentinean and Spanish researchers into the origins of the indigenous societies of Patagonia. The difference being that the research team no doubt included descendents of those very societies. Quite different from what went down at Arizona State University. (This is aside from the obvious breach of trust that occurred at Arizona State.)
It also seems like the Havasupai people are a very small number, so publishing findings about their DNA becomes personally identifiable information.
Reminds me of a lecture I attended where the presenter used a case study. She gave the ethnicity of the person, used her first name, schools attended, profession, husband’s profession, gender and ages of children … Among that ethnic group it was just about as good as giving her full name. And her husband’s professional circle was very small as well.