Community dissemination and genetic research: Moving beyond results reporting

Susan Brown Trinidad, Evette J. Ludman, Scarlett Hopkins, Rosalina D. James, Theresa J. Hoeft, Annie Kinegak, Henry Lupie, Ralph Kinegak, Bert Boyer, Wylie Burke

Research output: Contribution to journalArticle

10 Citations (Scopus)

Abstract

The community-based participatory research (CBPR) literature notes that researchers should share study results with communities. In the case of human genetic research, results may be scientifically interesting but lack clinical relevance. The goals of this study were to learn what kinds of information community members want to receive about genetic research and how such information should be conveyed. We conducted eight focus group discussions with Yup'ik Alaska Native people in southwest Alaska (N=60) and 6 (N=61) with members of a large health maintenance organization in Seattle, Washington. Participants wanted to receive genetic information they "could do something about" and wanted clinically actionable information to be shared with their healthcare providers; they also wanted researchers to share knowledge about other topics of importance to the community. Although Alaska Native participants were generally less familiar with western scientific terms and less interested in web-based information sources, the main findings were the same in Alaska and Seattle: participants wished for ongoing dialogue, including opportunities for informal, small-group conversations, and receiving information that had local relevance. Effective community dissemination is more than a matter of presenting study results in lay language. Community members should be involved in both defining culturally appropriate communication strategies and in determining which information should be shared. Reframing dissemination as a two-way dialogue, rather than a one-way broadcast, supports the twin aims of advancing scientific knowledge and achieving community benefit.

Original languageEnglish (US)
Pages (from-to)1542-1550
Number of pages9
JournalAmerican Journal of Medical Genetics, Part A
Volume167
Issue number7
DOIs
StatePublished - Jul 1 2015
Externally publishedYes

Fingerprint

Genetic Research
Research Personnel
Community-Based Participatory Research
Health Maintenance Organizations
Medical Genetics
Focus Groups
Health Personnel
Language
Communication

Keywords

  • Alaska Native
  • Communication
  • Dissemination
  • Genetic research
  • Qualitative research

ASJC Scopus subject areas

  • Genetics
  • Genetics(clinical)

Cite this

Trinidad, S. B., Ludman, E. J., Hopkins, S., James, R. D., Hoeft, T. J., Kinegak, A., ... Burke, W. (2015). Community dissemination and genetic research: Moving beyond results reporting. American Journal of Medical Genetics, Part A, 167(7), 1542-1550. https://doi.org/10.1002/ajmg.a.37028

Community dissemination and genetic research : Moving beyond results reporting. / Trinidad, Susan Brown; Ludman, Evette J.; Hopkins, Scarlett; James, Rosalina D.; Hoeft, Theresa J.; Kinegak, Annie; Lupie, Henry; Kinegak, Ralph; Boyer, Bert; Burke, Wylie.

In: American Journal of Medical Genetics, Part A, Vol. 167, No. 7, 01.07.2015, p. 1542-1550.

Research output: Contribution to journalArticle

Trinidad, SB, Ludman, EJ, Hopkins, S, James, RD, Hoeft, TJ, Kinegak, A, Lupie, H, Kinegak, R, Boyer, B & Burke, W 2015, 'Community dissemination and genetic research: Moving beyond results reporting', American Journal of Medical Genetics, Part A, vol. 167, no. 7, pp. 1542-1550. https://doi.org/10.1002/ajmg.a.37028
Trinidad SB, Ludman EJ, Hopkins S, James RD, Hoeft TJ, Kinegak A et al. Community dissemination and genetic research: Moving beyond results reporting. American Journal of Medical Genetics, Part A. 2015 Jul 1;167(7):1542-1550. https://doi.org/10.1002/ajmg.a.37028
Trinidad, Susan Brown ; Ludman, Evette J. ; Hopkins, Scarlett ; James, Rosalina D. ; Hoeft, Theresa J. ; Kinegak, Annie ; Lupie, Henry ; Kinegak, Ralph ; Boyer, Bert ; Burke, Wylie. / Community dissemination and genetic research : Moving beyond results reporting. In: American Journal of Medical Genetics, Part A. 2015 ; Vol. 167, No. 7. pp. 1542-1550.
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