I know everyone has been eagerly awaiting the next blog post; this busy spring is melting into a busy summer, as I’m sure many of you can relate to. There has been a lot going on here at Sanford Research with people traveling to conferences, writing grants, and most excitingly: preparing for our summer interns that will be arriving in a few short weeks! I hope to have some of them come up with ideas and try their hand at blogging – so stay tuned for that.

For this post, I want to talk about how important it is for tribes and people working with tribes to be involved in national conversations. A few weeks ago, I spent five days in Boston attending conferences and workshops put on by the Public Responsibility in Medicine and Research (PRIM&R) and the Office for Human Research Protections (OHRP). In 2009, I spent the summer in Boston as part of the Four Directions Summer Research Program, so it was nice to be back and pretend as if I knew how to use the subway. Anyway, both PRIM&R and OHRP offer spaces for people involved in research to seek guidance on research ethics and regulations, with the OHRP providing support and guidance for all of the federal agencies that conduct research. I think these topic areas can be heavy and may be boring for some people, so I really was not sure what to expect by attending the conference and two days of workshops.

First, I had fun and I gained some new perspectives when it comes to conducting research with vulnerable populations, the Common Rule, and the informed consent process. The hosts of the events were so welcoming and accommodating and really, who would not enjoy hanging out in Boston for a few days? While I did have fun and had a great time, this was really an uncomfortable experience for me. I felt out of place and maybe a little over-my-head in some of these conversations.

I’ve been reflecting back on this to try to figure out why I felt this way when everyone there was kind and welcoming and I think it was simply because I was the only one there who worked with tribal communities. You might be wondering why this would make a difference or why it would affect my experience that much, and it really comes down to tribal sovereignty and the different lens that tribal research review boards look at research ethics and research protections. I’m used to almost entirely thinking of research from this vantage point, so it was disorienting to be in a space talking about research ethics and regulations that didn’t focus on tribal efforts to manage research.

The speakers that PRIM&R and OHRP brought in were obviously knowledgeable about research ethics and regulations but really only looked at research from a Western perspective. All of the conversations I overheard and was involved in left out the unique perspectives of tribal communities in reviewing research. This made me doubt myself at times but it also illustrated just how vital it is for those of us who are tribal members working in research or those of us who are researchers working with tribal communities to be a part of these bigger conversations. We must keep making ourselves visible and keep talking about research ethics from the perspective of tribal communities, even if it is a little uncomfortable.

By: Michaela Seiber, MPH | Sisseton-Wahpeton Oyate | CRCAIH Regulatory Knowledge Core | CHOPR READ Core | This email address is being protected from spambots. You need JavaScript enabled to view it.

In this poignant, informative, and engaging presentation, Dr. Boyer discussed the importance of conducting genetics research with cultural responsivity and community inclusiveness and responsiveness. In summation, this study provided the scientific evidence for the things the Yup’ik elders already knew. That is, that an active lifestyle and a nutritional diet of traditional foods are nutrigenomic protective factors.  

He started by giving a brief overview of the development of the Center for Alaska Native Health Research (CANHR), which was established in 2001. They started hosting genetic education workshops in 2002, and data collection began in 2003. He then discussed shared their cultural values of respect, responsibility, and reciprocity and their journey building trusting partnerships with Yup’ik peoples in the YK Delta.

Notably, the Yup’ik people have a diabetes prevalence rate of approximately half of the rest of the U.S. population. Therefore, they were especially interested in finding out why this is the case. What are their mechanisms of protection?

With respect to physical activity, their key finding was that constantly moving and keeping busy is better than going out and getting a lot of exercise. But what about diet? How does a traditional diet act as a protective factor?

If you ask a Yup’ik person what they eat, they’ll likely say, “Well, it depends.” That being said, Yup’ik people don’t eat a lot of leafy green vegetables, but they do eat a lot of oceanic fish. As one Yup’ik woman stated, “I’m a hooker. I love hooking fish!” Their consumption of fish was one of the most important, if not the most important, protective factors against disease.

One of the concerns expressed by Yup’ik elders was for the younger generation. They noted that older people tend to have a more traditional diet, but youth’s intake of traditional foods is declining.

Another key part of his presentation was the ethics of dissemination. They formed a Community Planning Group which was composed of past participants in their genetic studies and explored Yup’ik understandings of heredity, discussed sharing research outcomes, prioritized future research, and discussed Oregon Health & Science University and precision medicine.

Through these conversations, they learned that Yup’ik people are not opposed to genetics research, but they want to have a say in data stewardship. People want to know their health research results, particularly if there’s something that can be done about it. The desire to focus on youth was also expressed, as well as providers being a key audience, the use of everyday language, and having face-to-face discussions.

Dr. Boyer ended his talk by reiterating the importance of long-term, trusting partnerships as being fundamental when conducting health research and the role of face-to-face communication in facilitating bi-directional communication and mutual reciprocity and respect.

By: Tracey McMahon, MS | Research Project Manager | Kenyon Lab | Sanford Research

Wednesday morning began with a presentation by Dr. Anita Kinney, a population scientist investigating topics in the area of cancer prevention and control for over 25 years with a focus on behavioral, social (ELSI) and care delivery genomics research for over two decades. Her presentation titled “Bridging the Chasm between Genomic Discovery and Translation: Communication, Behavior, and Care Delivery” discussed the intrapersonal, social, system-level and policy level issues that influence the translation of genomic-based precision prevention and health equity.

She began by explaining that precision prevention considers an individual’s unique cancer risk profile based on their genome, behavioral issues, socioeconomic and cultural factors, epidemiologic factors, and community engagement. She then addressed the challenges of translating genomic testing of the individual to the population. An individual (patient) interacts with their healthcare provider, family, and culture to discuss health issues, this then expands to interactions with medical institutions and health insurance plans, and further expands to interactions with the community and policy.

Priority areas in cancer prevention, detection, and survivorship include effective communication, expanding the reach to underserved and under-represented groups, and improving motivational impact of behavior change intervention. She discussed ethics and barriers to genomic translation in AI/AN populations, including the population’s mistrust of genetic research, such as privacy, misuse, and fear of stigmatizing interpretations of genetic information. She addressed the impact of the paradigm shift the field is experiencing moving away from syndrome-based testing to multi-gene testing with multi-gene panels. She discussed her research into alternative ways to communicate with rural populations with the family CARE cluster randomized trial, which asked the question: Is a theoretically-based remote personalized cancer risk communication intervention (TeleCARE) more effective than generic print on colonoscopy uptake? They found that the teleCARE intervention participants were more likely to get a screening versus participants who just received generic print on colonoscopy uptake. Dr. Kinney concluded her presentation by introducing various ongoing projects based off of her teleCARE intervention and a brief overview of the exciting new applications of epigenetics to genetic counseling.

By: Elizabeth Roden, BS | Population Health - Evaluation | Graduate Student | Sanford Research

After a delicious lunch of Three Sisters Stew, buffalo (and vegan!) meatballs, and cornbread, and following a delightful, warm, and humor-filled musical performance by Jackie Bird, a Dakota and Hidatsa Native American Performer, we all returned to the lecture hall for an afternoon session featuring four CRCAIH Tribal Partners, Kathryn (“Katie”) Blindman (OST), Anita Frederick (TMBCI), Heather Larsen (SWO), and Simone Bordeaux (RST) (Patti DuFault from Fond du Lac, and Ashley Parisien from Turtle Mountain couldn’t make it due to the snow).

Melissa Buffalo moderated, and began by introducing CRCAIH’s aims, cores, and divisions. CRCAIH was founded in 2012 with the expressed two-pronged goal of increasing tribal communities’ capacity for research, and increasing the amount of quality, innovative research being conducted in American Indian health.  There were two tribal partners written into the original contract, the Oglala Sioux Tribe and the Cheyenne River Sioux Tribe, and, since then, five tribes have been added to the partnership.

This is the last year of the CRCAIH grant, and the purpose of the session was, more than anything, to convey the importance of these partnerships over the past five years for establishing and strengthening tribal research infrastructure. The CRCAIH partners were able to collaborate with one another, and to utilize the CRCAIH Cores---the Collection Methods, Management and Analysis of Data Core, to help plan and design research projects; and the Research Ethics and Dissemination Core, to provide research support, for example---in order to create and strengthen their individual tribal IRBs/RRBs.

Amidst discussions about resource sharing, community needs assessments, networking, and retreats, Heather Larsen took a moment to explain just how helpful these collaborative partnerships have been to the work she does in her tribal community. The tribal partner collaboration was not an expected outcome of the grant, she pointed out, but over the years, as they started sharing their stories, their struggles, and their goals, they realized just how beneficial sharing information and resources was.  For Heather, having such a unique, accessible community just a phone call away has been critical to the work she’s been able to accomplish in Sisseton.  “It’s not just the funding, it’s the support” that makes CRCAIH so effective, Heather said, and the impending loss of that partnership is scary.  “I look up to the ladies I’m sitting by,” she said, and you could tell she really meant it.

Anita concluded the session with an impassioned speech about continuing CRCAIH through a mentoring program, despite the end of funding in the next year. “None of this has been easy,” she said, but it has clearly been worth it.  Sitting in the audience, listening to the five intelligent, passionate women speak at the front of the room about their tribes, their families, and their commitments, left me feeling confident that, while CRCAIH might change in the coming year, it certainly won’t vanish.

By: Anna Simonson, PhD | Kenyon Lab | Post-doctoral Fellow | Sanford Research