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.”