Tribe Wins Fight to Limit Research of Its DNA
April 22nd, 2010 | Published in Culture, Education, History, Social Issues | Comments (1)
by Amy Harmon, The New York Times
This is an interesting piece involving the Havasupai Indians, a tribe located in Arizona, and a group of research scientists of Arizona State University.
It seems that in 1990, blood samples were taken from tribal members by scientists from ASU for the purpose of discovering the reason for the devastating rate of diabetes among the tribal members.
What tribal members didn’t know was that in addition to diabetes research, their blood was being used for tests involving various other types of genetic research. Tribal members stated that the additional research was done without their permission and sued ASU. Both tribal members and researchers have viewpoints of the incident.
Tribal council woman Carletta Tilousi stated:
“I’m not against scientific research,…I just want it to be done right. They used our blood for all these studies, people got degrees and grants, and they never asked our permission.”
On the other hand, the article states:
“Researchers and institutions that receive federal funds are required to receive “informed consent” from subjects, ensuring that they understand the risks and benefits before they participate. But such protections were designed primarily for research that carried physical risks, like experimental drug trials or surgery…
Is it necessary, for instance, to ask someone who has donated DNA for research on heart disease if that DNA can be used for Alzheimer’s or addiction research?”
Here is a statement from Dr. Markow, the geneticist held responsible for the improper use of the testing material:
“The consent form was purposely simple,… given that English was a second language for many Havasupai, and few of the tribe’s 650 members had graduated from high school. They were always given the opportunity to ask questions, she said, and students were also instructed to explain the project and get written and verbal consent from donors.”
The seven-year legal battle resulted in the Havasupai receiving a cash settlement, and support from the university in finding funding for a much needed clinic and high school. In addition, the blood samples taken from the tribal members will be returned and buried with the remains of the members in a sacred ceremony.
There is more to this article, so be sure to read the entire piece, then leave us your thoughts on this issue. Your opinions are appreciated.

