Convergence Despite Divergence: Views of Academic and Community Stakeholders about the Ethics of Community-Engaged Research

Ethn Dis. 2019 Apr 18;29(2):309-316. doi: 10.18865/ed.29.2.309. eCollection 2019 Spring.

Abstract

Purpose: Stakeholder engagement and community-engaged research (CEnR) are recognized as approaches necessary to promote health equity. Few studies have examined variations in stakeholder perspectives on research ethics despite the potential for meaningful differences. Our study examines the association between stakeholders' characteristics and their perception of the importance of 15 stakeholder-developed CEnR ethical statements.

Design: Quantitative analysis of close-ended Delphi survey.

Participants: We recruited a national, non-random, purposive sample of people who were eligible if they endorsed conducting CEnR in public health or biomedical fields. Participants were recruited from publicly available information, professional email distributions, and snowball sampling.

Main outcome measures: We designed our close-ended Delphi survey from the results of 15 CEnR ethical statements, which were developed from a consensus development workshop with academic and community stakeholders.

Results: 259 participants completed the Delphi survey. The results demonstrated that stakeholders' characteristics (affiliation, ethnicity, number of CEnR relationships, and duration of CEnR partnerships) were not associated with their perception of the importance of 15 ethical statements.

Conclusions: The strong agreement among stakeholders on these broad, aspirational ethical statements can help guide partnerships toward ethical decisions and actions. Continued research about variability among stakeholders' ethics perspectives is needed to bolster the capacity of CEnR to contribute to health equity.

Keywords: Community-Engaged Research; Health Equity; Research Ethics; Survey and Questionnaires.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Community Networks / organization & administration*
  • Community-Based Participatory Research / organization & administration*
  • Delphi Technique
  • Ethics Committees, Research*
  • Health Promotion / organization & administration
  • Humans
  • Public Health
  • Research Design
  • Stakeholder Participation*