Sharing results from complex disease genetics studies: a community based participatory research approach

Abstract

OBJECTIVES: Dissemination of research results to communities builds capacity of the community to understand and utilize the results. The objective of this manuscript was to propose a culturally appropriate approach to disseminate complex disease genetics research findings in small Alaska Native communities. STUDY DESIGN: The Center for Alaska Native Health Research is a community-based participatory research project (CBPR) directed at understanding the interactions between genetic, nutritional and psychosocial risk factors for obesity, diabetes, and cardiovascular disease in Yup'ik Eskimos. METHODS: We have consulted with regional healthcare providers, tribal leaders, and university-, local-, and national-institutional review boards to identify potential mechanisms for sharing population-based genetics research results or progress. RESULTS: We propose a six step CBPR-approach to conducting genetics research in isolated identifiable communities. This CPBR-approach includes generating a common research question, determining community interest, recruitment, capacity building, sharing power and control, avoiding group harm, and development of culturally appropriate dissemination procedures. CONCLUSIONS: Research scientists and community members should both benefit from population-based genetics research. Although we are just beginning our discussions with regard to sharing genetics research progress and findings, we believe that it is essential move forward as co-researchers in the CBPR enterprise.

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