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

Perceptions of Pharmacogenetic Research to Guide Tobacco Cessation by Patients, Providers and Leaders in a Tribal Healthcare Setting

“…The results of the present study are consistent with perceptions that genetic research is viewed as a 'double-edged sword' [22], research must address health priorities and have appropriate tribal oversight to be supported [25], researchers must be trustworthy partners throughout the research process, and that CBPR is a model for that engagement [33]. Participants' desire to know the history of previous pharmacogenetic research done at the organization and with the partners is consistent with the notion that long-term partnerships on community priorities were an important consideration of participants [23].…”

“…Shaw et al found that AN people viewed pharmacogenetic research as carrying both risks (e.g., healthcare rationing, misuse of information and stigma to individuals and the AN community) and rewards (e.g., decreased healthcare costs, improved clinical outcomes). A communitybased participatory research (CBPR) approach has been shown to be a successful method in bridging the gap between science and practice through community engagement, particularly in AI/AN populations [32][33][34].…”

Developing a Transcultural Academic-Community Partnership to Arrest Obesity

“…CBPR fosters open communication, trust, accountability, and keeps participants engaged from conceptualization to implementation of the project (Ammerman, Corbie-Smith, St. George, Washington, Weathers, & Jackson-Christian, 2003; Boyer, Mohatt, Pasker, Drew, & McGlone, 2007; Pazoki, Nabipour, Seyednezami, & Imami, 2007). Community ownership of the project, along with the relevancy of the information generated for the promotion and implementation of intervention strategies, is fundamental to the success and sustainability of the project.…”

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“…Because incorporating biological sampling into a CBPR framework is new in Greenland, it will become important for the members of the research team involved in the Greenland Sexual Health Study to communicate to the communities the status of the bio-banking process. This must be done in order to strengthen the relationship between the researchers and the communities, and to build trust and understanding of a research process that involves collecting biological samples (12).…”