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