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Build Relationships, Respect Autonomy to Conduct Research Within Tribal Populations

Researchers seeking to conduct studies involving American Indian and Alaska Native (AIAN) communities need to work closely with tribal communities and take into account their unique cultures and perspectives, experts said at a workshop sponsored by the HHS Office for Human Research Protections.[1]

As part of this process, in which it can take years to gain trust from tribal leaders, researchers need to become familiar with community norms, cultures and institutions and how they relate to the Belmont principles, and must respect rules that call for tribal authority over the research and ownership of data, the experts said at the virtual workshop held last year.

Most people are familiar with the Tuskegee study, which led to extreme distrust of medical research in the Black community, explained Spero Manson, distinguished professor of public health and psychiatry, Colorado Trust Chair in American Indian Health, and director of the Centers for American Indian & Alaska Native Health at the Colorado School of Public Health. Manson most recently also served on NIH’s Advisory Committee to the Director. However, fewer people know that AIAN communities had similar experiences with medical research, Manson said.

For example, the results of the Barrow Alcohol Study, in which researchers examined substance abuse and suicide in Barrow, Alaska, were released to the press in January 1980 before they were briefed to the local community, stigmatizing the population and crippling the ability of the town to obtain financing to continue developing their local resources and facilities, he said.

In another example, the Havasupai Tribe agreed in 1989 to let researchers from Arizona State University draw and test their blood in an attempt to identify a cause for the elevated rate of diabetes found in that population, Manson said. However, lawsuits ensued alleging misuse of biospecimens and genetic information to move beyond the risk of diabetes to Alzheimer’s disease, and even to use the biospecimens and genetic information to trace ancestral migration across the continent, he said.

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