By Gary Evans, Medical Writer
In what may help overcome a history of well-earned distrust by indigenous people, a research collaborative has developed a curriculum to teach IRB members and others the distinct cultural issues that arise in studying Native Americans.
To cite one example — which tragically updates the traditional petition of Native Americans for the return of stolen lands — the Havasupai Tribe in Arizona successfully sued to get their DNA samples back after finding they were used for purposes other than the diabetes research they agreed to in 1990. (For more information on the lawsuit and study, see the story in the December 2016 issue of IRB Advisor.)
Even assuming all parties come to the table in good faith, there are cultural barriers that may confound well-intentioned researchers and IRBs. To address this issue, Cynthia Pearson, PhD, a professor in the school of social work at the University of Washington in Seattle, began developing a curriculum to teach people about ethical research with American Indian and Alaska Natives. Working with a network of partners including native tribes and other researchers, Pearson created a training curriculum that explains key aspects of tribal sovereignty and includes a code of ethics that acknowledges past wrongs. (For more information, see story on code of ethics in this issue.)
The curriculum can be accessed online at: http://bit.ly/2FWgvdj. Pearson and colleagues recently published a paper analyzing the methods used to create the training.1
Training for those engaged in research is primarily written by and for academic types, but the tribal governments have a right to oversee any research that takes place on their own land.
“We started involving our indigenous community members in research, but the training didn’t resonate,” Pearson says. “It didn’t really speak to the issues that are happening in tribal communities. We decided to write a training curriculum that really speaks to the issues that occur in American Indian and Alaska Native communities.”
In doing that, the curriculum can show IRBs how the Common Rule applies to these indigenous communities. For example, one typically thinks of informed consent in terms of a single research subject, but American indigenous people have a tribal identity, a collective that supersedes the individual. Thus, giving individuals anonymity but naming the tribe in a research report can be seen as a grave transgression by native people.
“Some of the specific things are recognizing tribal sovereignty, but also recognizing the history of colonialization and trauma that has happened as the result of research,” Pearson says. “When you are dealing with small communities and you are naming those [tribes], then there is the chance that you may harm those communities.”
There are 567 federally recognized indigenous tribes in the U.S.
“Those are all sovereign governments,” she says. “So just as if you were going to Mozambique or China, you would not pop in and start conducting research without getting appropriate permission,” she says. “This is important to understand when you are working with tribal communities. I think most IRB members may be getting that now.”
In the curriculum and related materials, Pearson and partners outline these type of issues and different types of tribal approval that could occur.
“You don’t necessarily need to go to a tribal council, but there might be other steps along the way that should be considered,” she says. “Another real important thing has to do with respect for persons.”
Such respect is among the central tenets of the Belmont Report, but again, it extends beyond individuals to the tribe itself.
“You think about the Havasupai study when they started doing research reports that named the tribe,” she says. “That case was all about respect for communities as opposed to just respect for a person.”
The curriculum was created with input from representatives of tribes, academics, and researchers who work with indigenous communities.
“We also pulled together some IRB administrators,” she says. “And we had a member of the National Congress of American Indians that sat in on one of our expert panels. One of the first things we did was hold a meeting with the community people. These are leaders in their communities that have reviewed research protocols — very savvy people.”
An initial attempt to translate and rewrite existing academic and tribal research documents was abandoned in favor of a clean slate.
“Originally, the curriculum was developed for American Indians and Alaska Natives and people conducting research within those communities,” she says. “As it has gone out, we have heard repeatedly that it is really good for any person, academic or otherwise, to do this training. If they are going to conduct research in Indian country, they should review this curriculum.”
The curriculum is now being reviewed for possible inclusion in the ethical research protocols offered by the Collaborative Institutional Training Initiative Program. “This is great for IRB members,” Pearson says. “There may be a lot of things they don’t know about working with diverse communities. This curriculum can help them get that understanding and exposure to things that they should be considering and questions to ask while reviewing a protocol.”
As part of the study, the curriculum was tested and validated among a national sample of American Indians and Alaska Natives, with 244 using the new material and 246 using traditional online training.
“Using an 80% correct item cutoff at first attempt as passing criterion, the tailored curriculum achieved a 59.3% passing rate versus 28.1% in the standard curriculum,” the researchers reported. “Participants took less time to complete the training and reported significantly higher acceptability, satisfaction, and understandability of the … tailored curriculum.”
1. Pearson CR, Parker M, Zhou C, et al. A culturally tailored research ethics training curriculum for American Indian and Alaska Native communities: A randomized comparison trial. Critical Public Health 2018; DOI: 10.1080/09581596.2018.1434482.