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

Center for Health Outcomes and Population Research CoBRE Grant Update from Project Leads

Dr.Kenyon and Dr. Deutsch are giving brief overviews of their CoBRE projects.

Dr. DenYelle Kenyon, PhD

DenYelle’s project is focused on American Indian educational disparity. She had great graphs that really showcase the graduation rates for American Indian, White and the U.S. total. The graphs also highlight the need to understand why these education disparities exist. She is specifically looking at social networks during the transition to college. She focused on education deserts and what that really means is being more than 25 miles from a public college and w/o high-speed internet connection to access online classes. There is 11.8% of AI/AN adults living in complete education deserts. Why is this a problem? It makes it that much harder not having a college close to where they are living. Project goal is to provide more support and resources. Currently they are doing interviews with college staff and faculty. They are also interviewing freshman student’s w/follow-up every 6 months. The students are both Native and non-native. The Kenyon team will also be doing social network analysis. This is important because then we can better understand the relationships and support that the student has during their time in college. Next step is finishing 1^st cohort data collection and began social network analyses. They will look at differences between Native and non-Native. Future steps would be to do qualitative data as well.

Arielle Deutsch, PhD

Arielle just recently got approval to start her CoBRE project . Arielle’s new to this area and South Dakota. She highlighted the story behind her research questions. Instead of doing intervention in FASD she decided to go into intimate partner violence she felt that programming in this area was lacking. She is highlighting the relationship between alcohol misuse, risky unprotected sexual behavior, pregnancy and partner violence. She believes the above is really all cycled together. She is using a community based strategy. How do we change alcohol misuse behaviors? Protected factors that would help contraception use? She is learning how the systems within the community. System dynamic model is really the same things as a community based model. Systems based approaches, really looks at the big picture on a complex issue, how does culture, individual, access come together to influence the above associations. She did a great job of explaining really what systems based approach means. It prioritizes community/indigenous knowledge, requires transfer of models to community, and developed by the community, she stressed the importance of having community by in. More work needs to be done to understand the community. She is developing ties with Native community in both Rapid City and Indian Country. Continuing to be present at community meetings and conversations. She will be doing qualitative coding of CHOICES data for themes related to protective sources of support and risk factors. She will also be doing a health longitudinal relations between IPV,alcohol and sexual risk. She will focus more on developing the relationships with the communities and building the trust and relationship.

By: Char Green-Maximo | Ft.Peck Assiniboine and Sioux Tribes (Montana) | Sanford Research - Research Assistant