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

Int J Circumpolar Health. 2007 Feb;66(1):19-30. doi: 10.3402/ijch.v66i1.18221.

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.

Publication types

  • Research Support, N.I.H., Extramural

MeSH terms

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