Community partnership in precision medicine: Themes from a community engagement conference

Loretta Jones, Kenneth B. Wells, Henry J. Lin, Christina Wang, Audrey Kawaiopua Alo, Pluscedia Williams, Felica Jones, Patricia I. Dickson, Sophia Han, Dominga Pardo, Keith Norris, Andrea Jones, Aziza Lucas Wright, Kawen Young, Jerome I. Rotter

Research output: Contribution to journalArticle

2 Scopus citations

Abstract

Background: Patient and community engagement in under-resourced communities is a key issue for precision medicine research. We report proceedings from a community-academic partnered conference in Los Angeles to promote community understanding of precision medicine and generate engagement recommendations. Methods: Planning group review of planning, presentations, and audience discussions from facilitator notes and participant survey data from a one-day conference. Findings: Community-academic planning broadened community participation and presentations. More than 80% of survey participants indicated they would participate in the national precision medicine initiative, and most were willing to share diverse sources of data. Discussions identified trust concerns related to historical research abuses, data privacy, potential effects of findings on health care, personal safety, research procedures, the time-frame for benefit, and confusion about different initiatives. Concerns were balanced by belief in science to improve health. Recommendations included a community partnered participatory approach with support for local community and academic teams to engage stakeholders with written/online resources and partnered workgroups addressing key concerns. Conclusion: Conference participants expressed high willingness to participate in precision medicine studies, but discussions highlighted trust and transparency issues and suggested community partnered research with local capacity building.

Original languageEnglish
Pages (from-to)503-510
Number of pages8
JournalEthnicity and Disease
Volume28
DOIs
StatePublished - Sep 2018
Externally publishedYes

Keywords

  • Community engagement
  • Partnered research
  • Precision medicine
  • Research ethics
  • Under-resourced communities

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    Jones, L., Wells, K. B., Lin, H. J., Wang, C., Alo, A. K., Williams, P., Jones, F., Dickson, P. I., Han, S., Pardo, D., Norris, K., Jones, A., Wright, A. L., Young, K., & Rotter, J. I. (2018). Community partnership in precision medicine: Themes from a community engagement conference. Ethnicity and Disease, 28, 503-510. https://doi.org/10.18865/ed.28.S2.503