Faculty Collaboration Database

Sharing results from complex disease genetics studies: a community based participatory research approach. Int J Circumpolar Health 2007 Feb;66(1):19-30

Date

04/25/2007

Pubmed ID

17451131

DOI

10.3402/ijch.v66i1.18221

Scopus ID

2-s2.0-34248140101 (requires institutional sign-in at Scopus site)   41 Citations

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.

Author List

Boyer BB, Mohatt GV, Pasker RL, Drew EM, McGlone KK

MESH terms used to index this publication - Major topics in bold

Alaska
Community Health Planning
Community Networks
Community Participation
Cooperative Behavior
Cultural Characteristics
Female
Genetic Predisposition to Disease
Humans
Information Dissemination
Male
Research Design
United States
United States Indian Health Service