The trust-builders

UND’s Department of Indigenous Health offers area researchers novel training on conducting research with Indigenous communities more ethically.

In 2004, the Havasupai Tribe of American Indians, which has called the American Grand Canyon its home for more than 800 years, filed a lawsuit against the Arizona Board of Regents and Arizona State University (ASU).

Researchers affiliated with these institutions, the Tribe charged, had used blood samples taken from Havasupai people for purposes other than what Tribe had agreed upon when they signed the researchers’ consent forms.

In the end, ASU incurred legal fees of almost $2 million (USD) and was ordered to reimburse the Tribe $700,000 and return all blood samples collected for ceremonial reincorporation into Tribal land.

This is the type of outcome that community-based researchers affiliated with the UND School of Medicine & Health Sciences (SMHS) Department of Indigenous Health (IH) are hoping to prevent not only at UND but across the region.

Enter rETHICS

For Julie Smith-Yliniemi, the prevention of such outcomes starts long before researchers of any background have contacted the communities they hope to engage.

“Oftentimes, researchers will say ‘I want to work with Natives and help those communities,’” explained Smith-Yliniemi, an assistant professor in the Department of Indigenous Health. “So, their intentions are good. But once they start the process, they realize, ‘Whoa, this is way more complex than I thought.’”

To help area researchers avoid any number of adverse outcomes, Smith-Yliniemi and her team began offering a module known by its acronym rETHICS – Research Ethics Training for Health in Indigenous Communities – in 2021.

Developed originally at the University of Washington around that time, rETHICS is a comprehensive, Institutional Review Board (IRB)-adjacent toolkit “designed to enhance the ethical conduct of researchers,” said the protocol’s co-developer Cynthia R. Pearson.

Geared toward not only Indigenous communities, but any researcher doing community-based work, the program “equips trainees with a deep understanding of ethical principles, cultural sensitivity, and practical skills necessary for conducting research that respects and benefits community participants,” said Pearson. “Many existing frameworks prioritize institutional perspectives, leaving gaps in understanding about how to conduct research that is both respectful and responsive to community needs. rETHICS was developed to fill this void – emphasizing culturally grounded ethics, reciprocal relationships, and community empowerment.”

After visiting the SMHS in 2024, Pearson was especially excited to partner with the nation’s first medical school-based Indigenous Health department on its training protocol.

Highlighting the efforts of not only Smith-Yliniemi but her IH faculty and staff Brynn Luger, Darcia Pingree, Rose Martin, and Courtney Davis – plus graduate student Laura Sawney – Pearson explained how “their proficiency in navigating complex ethical landscapes reflects a robust grasp of the curriculum and a commitment to ethical research practices. It’s been a great pleasure to learn about the excellent scholarship of the UND faculty and their how scholarship significantly contributes to Indigenous studies, health, and community development.”

Walking the walk

For Smith-Yliniemi, this “walking the walk” on UND’s part is especially necessary for researchers studying Indigenous communities because the processes in place for protecting research subjects varies greatly from Tribe to Tribe.

“Some Tribes, like the White Earth Nation, have a research review board that is similar to an IRB, but isn’t an IRB,” she said. “With other Tribes, you go through their Tribal Council, or you go through their Tribal college. So, because of the diversity of Tribes within the United States, there comes this unique perspective of how you go about working with communities in an ethical way.”

In other words, when it comes to ethical research protocols, there is no way to generalize the 574 federally recognized American Indian Tribes: the White Earth Nation (Ojibwe) in Minnesota is not the Standing Rock Sioux Tribe in North Dakota, which is not North Dakota’s Three Affiliated Tribes (Mandan, Hidatsa, and Arikara), which is not the Havasupai.

The rETHICS module utilizes that diversity, though, training researchers how to jettison their assumptions and go about developing community research projects with Indigenous communities, rather than for or “on” them.

ITRRC as core

One of the reasons the team at UND sought a training protocol like rETHICS, added Davis, the IH Tribal research liaison, is that it needed a way to streamline the work of its many Indigenous Trauma & Resilience Research Center (ITRRC) researchers.

In 2021, the National Institutes of Health awarded the SMHS a $10 Million grant to develop a research center dedicated to studying the physical and psychological consequences of unresolved trauma on Indigenous populations.

As part of the NIH Centers of Biomedical Research Excellence (CoBRE) program, the grant’s goal is to flip the narrative on Indigenous health from an emphasis on “disparities and deficits,” as one news release put it in 2021, to focusing on the health effects of a given culture’s many assets.

To that end, Smith-Yliniemi, Luger, Davis, and their colleagues are coordinating the Fourth Annual ITRRC Symposium, to be held on the UND campus in September 2025.

“We invite our CoBRE grantees to participate in this training once they receive their project award so that when they go out to do their research, they do so in an ethical way, in a meaningful way,” said Davis. “Even if they’ve done UND IRB, we want them to have a general understanding of rETHICS. It’s an ongoing effort to teach the University and the community about research with Indigenous communities.”

Likely presenting at the fall conference will be not only Davis and Smith-Yliniemi but Luger, who will discuss using ceremony-assisted treatment in the context of substance use disorder.

Fresh off her department’s second travel-based Global Indigenous Health Perspectives course in New Zealand, Luger, assistant professor in the Department of Indigenous Health, noted the alignment of the rETHICS training, the travel IH course, and the ITRRC conference.

“It’s one thing to read about all this, and it’s another to experience it,” she said of the combined ITRRC and IH efforts, adding that the cultural and research challenges American Indian communities still face today are mirrored by the Māori people of New Zealand. “Experiential learning is just so valuable, and I think it oftentimes gets overlooked. Through the travel course we were able to meet other Indigenous scholars, Māori scholars, and exchange business cards and say, ‘Hey, I’m doing this type of project.’ It’s just a really great network.”

Through such courses and training programs like rETHICS, concluded Smith-Yliniemi, UND’s Department of Indigenous Health and the Indigenous Trauma & Resilience Research Center are helping to “ensure that future research partnerships are built on trust, respect, and true collaboration.

“By centering Indigenous communities’ voices and sovereignty in the research process,” she said, “UND is helping to establish a long overdue standard for ethical and culturally grounded scholarship.”