Researcher: Tribes vary greatly on medical studiesNative American tribes are interested in taking part in medical research studies but tribes vary greatly on what is considered culturally acceptable, a Native American public health investigator said Wednesday.
By: Kristi Eaton, Associated Press
SIOUX FALLS, S.D. (AP) — Native American tribes are interested in taking part in medical research studies but tribes vary greatly on what is considered culturally acceptable, a Native American public health investigator said Wednesday.
Linda Burhansstipanov with the Native American Cancer Research Corp. said tribes are interested in taking part in research in the big issues that affect their tribal members, primarily studies dealing with diabetes, obesity, cancer and heart conditions. But the way specimens are stored and how the specimens like hair and blood are taken can be different for each tribe.
Burhansstipanov, a member of the Cherokee Nation, spoke at a summit hosted by the Collaborative Research Center for American Indian Health in Sioux Falls. The Research Center for American Indian Health brings together health researchers within South Dakota, North Dakota and Minnesota to build tribal programs to improve health among Native Americans.
"For many of the tribes, one single study, they're good on if it's a disease they have interest in. But they don't want specimens automatically stored," she said.
In some cases, she said, certain specimens should not be taken. For example, some tribes burn their hair while others are adamantly opposed to drawing blood.
"If you have a tribe that has a belief such as that, hair is not the specimen you want to collect. Do something else that is not going to be disrespectful," she said.
Another issue tribes' feel passionately about is maintaining ownership to the data gathered from their tribal members.
"Tribes are tired of being surveyed to death for one thing without getting a benefit of what summary of what the data are to be able to use for their own research," she said, adding that that is why researchers should partner with tribes so they can have access.
Burhansstipanov spoke about a lawsuit brought about by the Havasupai Tribe in Arizona against Arizona State University. The tribe gave samples to researchers at the university in hopes of learning about the tribe's high rate of diabetes. But the samples were used for many other studies, including some looking at mental illnesses, inbreeding and population migration. ASU agreed to pay $700,000 to tribal members and gave back the remaining samples.
Copyright 2013 The Associated Press.