Indian Tribe Wins Fight To Limit Research of Its DNA
The New York Times reports on the settlement of a case between Arizona State University and the Havasupai tribe to limit research of its DNA. Professor Hank Greely, an expert in law and the biosciences, is quoted in the film accompanying the article on the ethics of informed consent for DNA research. Amy Harmon filed this story:
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 keep Arizona State University employees 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.
The geneticist responsible for the research has said that she had obtained permission for wider-ranging genetic studies.
FROM THE VIDEO:
"My main worry isn't that the research data will be used in ways that will directly hurt the research subjects, but it will be used in ways that they don't agree with.
"But it's not just the Havasupai. It's a situation with thousands, hundreds of thousands, maybe millions of us across the country.
"I understand the scientist's perspective on this, and I share it to some extent. People are desperate to get more data, to get more samples. I think if we want people to give their samples to be used for a very wide range of projects, we should tell them up front. But we shouldn't say we're going to do it to study this disease (and other things) and then use it for all the other things."