'Blood Victory' In Medical Research Dispute
CELESTE HEADLEE, HOST:
This week is an anniversary for a Native-American community in Arizona. The Havasupai Tribe celebrated Blood Victory Day earlier this week in remembrance of their legal victory over Arizona State University's Board of Regents. The Havasupai have lived deep within the Grand Canyon for centuries, but the story of this case begins in the 1990s.
The tribe was suffering from high rates of diabetes and they wanted to know why, so they sought the help of researchers from Arizona State University. The tribe agreed to provide blood samples so the University could test their DNA but what they didn't know was how extensively their DNA would be used. Researchers looked into mental illness, inbreeding, even migratory patterns that contradicted Havasupai traditional belief.
Here to tell us more is Carletta Tilousi a member of the Havasupai Tribe. She was a student at Arizona State University in 2003 when she heard a graduate student's dissertation and discovered that Havasupai blood was being used for more than diabetes research. She joins us now from Supai village in Arizona. Welcome.
CARLETTA TILOUSI: Yes, hello, everybody.
HEADLEE: So you were one of those who donated blood originally to this research. Why did you agree to give your blood?
TILOUSI: I agreed to give my blood to see whether in the future I was going to be a diabetic. And that was the way I was approached by Arizona State University officials asking me a question about, do you want to know whether you're going to be diabetic when you get older? And I agreed to do that.
HEADLEE: Do you feel like you at least got the answer to that question? Did the tribe get what it wanted in terms of information about diabetes?
TILOUSI: I never got my answer. To this day I've never received any documents showing whether or not I am going to be diabetic or any of that sort from ASU.
HEADLEE: It's been four years since this went to court and I don't want to rehash all of the details of it. Suffice it to say that the courts decided that ASU had used the blood improperly, that they should have only used it for diabetes research.
But you kind of spearheaded this campaign. What motivated you to stick with this? Why was it so important that they use the blood only for diabetes research?
TILOUSI: Part of it is it was a part of my body that was taken from me, a part of my blood and a part of our bodies as Native-Americans are very sacred and special to us and we should respect it. And once they obtained that blood sample, my understanding was they didn't use it for the purpose of diabetes, they used it for other studies.
And that angered me because I was not properly informed nor did I sign any consent form or fully explained to what my blood was being used for. And it was benefiting different people in the university levels as professors have been obtaining their doctor's degrees and undergraduate students that were graduating with master's degrees while our people down here, first of all, were not informed of all of those studies but was also lied to from the beginning and I don't like being lied to. And it wasn't just myself that did this, it was a lot of people involved that helped with this legal case.
HEADLEE: It took seven years before a settlement was actually reached with ASU. The blood was returned to the tribe. The tribe settled out of court for $700,000. Are you happy with the settlement? Will it make a difference for the tribe?
TILOUSI: I am happy it's over. I am happy the case is over and we all are ready to move forward and begin the healing process. And the number one healing process for the Havasupai people was to obtain our blood samples back, bring them back to Supai Village 'cause these blood samples were of individuals who had passed on and some of the blood samples were my grandmother's mother's blood. And I believe that we owed it to our ancestors to obtain these blood samples back, bring them home and properly bury them. When that was done, I was happy.
HEADLEE: Were there any positive results of this whole situation of the donation of the blood, the research, the legal case? Was there any positive that came of all this?
TILOUSI: There were many positive things that came out of it. And one of the positive things was that all the tribes here in Arizona, the 21 tribes here, supported the Havasupai Tribe and stood alongside us along with tribes across the nation. And we had resolutions passed by the National Congress of American Indians and over 21 tribes passed resolutions supporting the Havasupai Tribe.
That shows that when another tribe needs help, other tribes are available to support us. And due to the Havasupai Tribe's case, the laws have changed for human subject research around the world. From now on, any indigenous people or any citizens of the United States that are being asked to participate in any research study, they have to be properly informed by written consent and explained to, especially if English is their second language. And those are big steps that made a big impact, not just here in Havasupai, but all over the world.
HEADLEE: Carletta Tilousi, the blood case liaison for the Havasupai Tribe and Arizona State University. Carletta, thank you so much.
TILOUSI: You're welcome. Transcript provided by NPR, Copyright NPR.