The blog of the Presidential Commission for the Study of Bioethical Issues

The scars of research done poorly

Carletta Tilousi of the Havasupai Tribal Council

For much of the meeting, a discussion around protection of human subjects in scientific research was abstract.

It became tangible today when Carletta Tilousi, member of the Havasupai Tribal Council in Supai, Arizona, told the story of a diabetes research study involving her tribe to the Presidential Commission for the Study of Bioethical Issues. The Commission is charged by President Obama to do a thorough review of human subjects protection to determine whether federal regulations and international standards adequately protect the participants.

Tilousi described the case of her tribe of 500 people who live at the bottom of the Grand Canyon as an example of how scientists can take advantage of a community that is isolated, poorly educated, and doesn’t have enough information to ask the right questions.

Starting in 1990, researchers at Arizona State University collected DNA samples from tribal members to study the tribe’s high rate of diabetes. Later, the tribe learned that those blood samples were used to study many other things. That infuriated tribal members, who demanded that the university return all blood samples.

Since then, the tribe has banished Arizona State researchers from stepping foot on tribal land, and the university paid $700,000 to 41 people in the study and agreed to return blood samples.

“I am a victim of a scientific research,” Tilousi told the Commission. “I provided blood and did not provide any written consent. One of the main goals of the blood case was to bring the blood samples back. When an individual passes away, everything he or she owns goes with the burial.”

The university researchers have returned 98 blood samples, but Tilousi said her blood samples and those of others still haven’t been returned.

“We are very upset about the lack of informed consent,” she said. She said information given to tribal members for the diabetes study was “not translated into our language. Some of the terms you use here need to be translated to me.”

Still, she said, “We are not against research. We feel that research is needed. But it needs to be done in a proper way. I hope we can seek a solution together.”

Several Commission members thanked her for coming and presenting her perspective. One member, Dr. Nelson Michael, Director of the Division of Retrovirology at the Walter Reed Army Institute of Research and Director of the U.S. Military HIV Research Program, told her: “Listening to what you said was very hard to hear.”

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7 Comments to The scars of research done poorly

  1. August 31, 2011 at 10:09 am | Permalink

    I am neither a tribal member or anyone involved in any way in scientific research, but reading about such unscrupulous practices infuriates me, also.

    How dare those in positions of educated authority & responsibilty have such little respect – if any – for fellow human beings’ rights.

  2. Frank Cruz's Gravatar Frank Cruz
    August 31, 2011 at 3:05 pm | Permalink

    What does begat( offspring) mean In the tribal language of the Tilousi. I would like to know . Please leave a post if you are tilousi and have an answer for me. If not too much please interpret death also. I need their nearest synonyms, please.

  3. September 13, 2011 at 3:40 pm | Permalink

    How dare those in positions of educated authority & responsibilty have such little respect – if any – for fellow human beings’ rights.

  4. Rhonda's Gravatar Rhonda
    September 26, 2011 at 4:54 am | Permalink

    I am not affiliated with any research and I am not of tribal heritage. As a L&D RN I believe both sides had an obligation. The researchers had an obligation to provide informed consent in the appropriate language, because it isn’t informed consent if the person doesn’t understand all of it. The researchers also had an obligation to recognize and respect the tribal heritage, which they should have studied before hand, so they would know they would need to return the blood. The tribal members had an obligation to inform the researchers that they would need the blood back because of their beliefs and/or had an obligation to refuse to participate if they didn’t understand everything being explained. I do not believe it takes a college education to understand that one is not obligated to participate in a research that they don’t understand.
    Now, I also believe that this gross oversight did not warrant a $700,000 settlement (around $17,000/person). OK, blood was drawn for diabetic studies, but other things could be studied as well – how did this hurt this person the blood was drawn from? Yes, they should have explained that other test could “possibly” be done or “would” be done, but though they failed to explain this part, doesn’t warrant financial gain. Apologize, return the blood and remember your ethical training.

  5. October 10, 2011 at 11:48 pm | Permalink

    I am not affiliated with any research and I am not of tribal heritage. As a L&D RN I believe both sides had an obligation. The researchers had an obligation to provide informed consent in the appropriate language, because it isn’t informed consent if the person doesn’t understand all of it. The researchers also had an obligation to recognize and respect the tribal heritage, which they should have studied before hand, so they would know they would need to return the blood. The tribal members had an obligation to inform the researchers that they would need the blood back because of their beliefs and/or had an obligation to refuse to participate if they didn’t understand everything being explained. I do not believe it takes a college education to understand that one is not obligated to participate in a research that they don’t understand.
    Now, I also believe that this gross oversight did not warrant a $700,000 settlement (around $17,000/person). OK, blood was drawn for diabetic studies, but other things could be studied as well – how did this hurt this person the blood was drawn from? Yes, they should have explained that other test could “possibly” be done or “would” be done, but though they failed to explain this part, doesn’t warrant financial gain. Apologize, return the blood and remember your ethical training.

    —–
    I think not only of what you’re referring to. Behind it there are many other factors

  6. Jane Mancini's Gravatar Jane Mancini
    December 29, 2011 at 3:36 pm | Permalink

    Because President Obama states that he has a commitment to government transparency, I pray his administration will put checks and balances in place to ensure ALL experimentation on human beings be ethical and thus readily open to review (transparency). In addition to requiring informed, written consent I would suggest there be a safety-net clause inplace that would permit the person to leave the experiment (if they should choose to do so).

    Here is a shortcut link to a page at this site (testimony non-consenting experimentation) by people who have asked for help: http://tinyurl.com/BioEthicsTIs

    If the potential for abuse and suffering is to be curtailed, then accountability, transparency and informed written consent (with an “out” option) are crucial.

  7. W's Gravatar W
    June 8, 2012 at 5:03 am | Permalink

    I am neither a tribal member or anyone involved in any way in scientific research, but reading about such unscrupulous practices infuriates me, also.

    How dare those in positions of educated authority & responsibilty have such little respect – if any – for fellow human beings’ rights.

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