文章基本信息

标题：Sharing results from complex disease genetics studies: a community based participatory research approach
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作者：Bert B. Boyer ; Gerald V. Mohatt ; Renee L. Pasker 等
期刊名称：International Journal of Circumpolar Health
印刷版ISSN：1239-9736
电子版ISSN：2242-3982
出版年度：2007
卷号：66
期号：1
DOI：10.3402/ijch.v66i1.18221
语种：English
摘要：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.Keywords: confidentiality,; Eskimo; family-based recruitment; group harm; reporting research results; Yup’ik(Int J Circumpolar Health 2007; 66(1):19-30)
关键词：confidentiality,; Eskimo; family-based recruitment; group harm; reporting research results; Yup’ik