Engaging rural communities in genetic research: challenges and opportunities

Caress Dean, Amanda J. Fogleman, Whitney E. Zahnd, Alexander E. Lipka, Ripan Singh Malhi, Kristin R. Delfino, Wiley D. Jenkins

Research output: Contribution to journalArticle

Abstract

Statistical analyses of health and disease in rural communities is frequently limited by low sample counts. Still, some studies indicate increased risk for some diseases even after adjustment for known risk factors. It has been hypothesized that the context of community formation in rural areas facilitates the propagation of genetic founder effects—potentially impacting disease susceptibility. However, outright examination of genetic diversity in such communities has not been performed. Our objective was to engage otherwise research-inexperienced rural communities of largely European descent in genomic research in the context of cancer susceptibility. From September 2015 to February 2016, we implemented a systematic process of progressive community engagement. This iterative method sought project buy-in from first the town mayor, then village council. If approved by both, a focus group of community members examined how residents might view the research, informed consent and specimen collection, and issues of privacy. We were successful in engaging three of the four communities approached for the research project. There was universal enthusiasm for the project by all mayors and village councils. The focus groups’ main point of discussion involved wording in the informed consent, with little concern regarding the research question or privacy. Perhaps contrary to popular thought, we found each community we approached to be both welcoming and enthusiastic about collaborating in research on genomic diversity. The systematic method of engagement did much to preserve community respect and autonomy and facilitated buy-in.

Original languageEnglish (US)
Pages (from-to)209-219
Number of pages11
JournalJournal of Community Genetics
Volume8
Issue number3
DOIs
StatePublished - Jul 1 2017

Keywords

  • Cancer
  • Focus groups
  • Genetics
  • Rural

ASJC Scopus subject areas

  • Epidemiology
  • Public Health, Environmental and Occupational Health
  • Genetics(clinical)

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