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Obstructionist Research Subjects

Thursday, April 22, 2010

In an article titled "Indian Tribe Wins Fight to Limit Research of Its DNA," Amy Harmon reports that Arizona State University has agreed to pay the Havasupai Indians of the Grand Canyon $700,000 and return blood samples collected from them for diabetes studies in the 1990s. The university's Board of Regents apologized to the tribe for...well, that part of the story is not clear. Not informing them that the samples might be used for "wider-ranging genetics"? Not informing the subjects that they reached negative conclusions and found no "diabetes gene" as they believed they had in a Pima Indian study? Not getting permission (no, that was done with simple-to-understand, signed consent forms, as was proper)? Coming to different conclusions about the Havasupai's origins than their myths and legends? Allowing people to "get degrees and grants" using "our blood"? Implying that the Havasupai are inbred? One Havasupai woman found that offensive.

Many tribal members were disgruntled because they were still suffering from diabetes after the university "took their blood."

Sorry, Havasupai Indians, a project participation consent form is not a treaty. But if you signed it, you should honor your word. You cannot go back now and require the researchers who use your samples to come to research conclusions that suit you and be silent about those that do not. Science (and society) doesn't work like that.

The tribe's dictates to the University were mercenary and the University's decision to pay the tribe off, wrong. The case sets a bad precedent and places another barrier between Indian peoples in remote areas and the real world. 

Comments

KATHRYN HALLIDAY commented on 24-Oct-2010 02:21 PM

Just happened across this. It reminded me of a conversation I had with a Turkish lady in about 1967 who was attending USC. She and her husband had gone out to the Havasupai area where she met a Havasupai woman who looked exactly like her grandmother in Turkey. It seemed that Havasu means about the same as it does in Turkish, she said.

Another Turkish person said that they are taught in school that the American Indians are related to the Turks.


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