Lessons from the river: identifying factors that influence the comprehension of genetics research in a Yup'ik Eskimo community

Abstract

"The Center for Alaska Native Health Research (CANHR) follows a Community-Based Participatory Research (CBPR) approach to study genetic, nutritional, behavioral and cultural protective factors for obesity and Type 2 diabetes in Yup'ik Eskimo communities. As a multidisciplinary center, investigators have returned results of many of their research projects to participants and participating communities. However, traditionally, genetics research results are only returned to participants under specific conditions, which are not necessarily compatible with a CBPR approach. I ask how CANHR can improve its dissemination efforts, especially in the area of genetics research. I identify factors that influence how community members receive and understand health information, including genetics information. This study uses a grounded theory approach to qualitatively analyze interviews and focus group discussions with Yup'ik community members, identify themes and construct a theoretical narrative. The primary factors that emerged include communication pathways (ways in which information is transmitted in the community); health beliefs (what people already know and believe about health); and social location (a person's role in the community). I examine each of these through the framework of a river metaphor to provide recommendations for improving CANHR's dissemination efforts with the communities, including genetics research results"--Leaf iii