The Havasupai Tribe’s Search for Justice in Diabetes Research Case

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Troubled by the increase in the number of diabetes cases among their members, the Havasupai Tribe, in 1989, agreed to let researchers from Arizona State University draw and test their blood to try to find a reason for the elevated rate of the disease.  When a paper on the research was published in 1991 stating there was no genetic reason for the high levels of diabetes, the tribe thought that was that.

However, Arizona State University continued using the samples for more research, according to an article in Native Peoples.  “Unbeknownst to the tribe,” writes Patty Talahongva, “additional research using the samples went on for more than a decade.”  “[I]nstead of using that blood solely for diabetes research [ASU staff members] conducted further research, on schizophrenia, inbreeding and even migration patterns.”

Havasupai tribal member Carletta Tilousi, when she learned about the further research, “was outraged to learn that blood drawn for a diabetes study,” Talahongva writes, “was instead being used to dispel her people’s beliefs and cultural teachings, which say that the Havasupai originated in the Grand Canyon.”  (A doctoral student’s dissertation claimed that the tribe had migrated across the Bering Strait.)

A lawsuit was brought against ASU “charging them with genetic piracy” and eventually a settlement was reached, including a $700,000 payment and a return of the blood samples to the tribe, as well as “new collaborations with the tribe, such as building a high school, a new health clinic and providing scholarships to Havasupai tribal members to each of the state’s three universities.” 

Talahongva brings up questions, though, as to whether or not justice will be served:

“The tribe has fewer than 700 enrolled members.  Their high school graduation rate is low and few Havasupai end up enrolling in college, thus many observers question the value of the promises made….The settlement also does not hold the original researchers accountable for their actions.”

In the end, the awareness of the case among other tribes may be the best thing to come of it, because “[a]s news of the settlement has spread, many tribes and tribal organizations say the case is a good example of why tribes need to adopt and implement scientific research protocols and ordinances.”

Unfortunately, the high levels of diabetes have not been reduced in the last two decades since the Havasupai originally sought help.  The disease, Talahongva writes, “is still rampant among [the tribe].”

Talahongva’s story is not available online, however more on this story and its implications on DNA research can be found in this New York Times article, as well as in the article “Indian Givers” in Phoenix New Times, which broke this story back in 2004, according to New Times

Source:Native Peoples (Article only available in print edition.)

Image by The Sierra Club, liscenced under Creative Commons

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