Open AccessConvergence Despite Divergence: Views of Academic and Community Stakeholders about the Ethics of Community-Engaged Research
Author(s) -
Stephanie M. Hoover,
Shivam Tiwari,
Jimin Kim,
Melissa Green,
Al Richmond,
Mysha Wynn,
Kyle Simone Nisbeth,
Stuart Rennie,
Giselle Corbie-Smith
Publication year - 2019
Publication title -
ethnicity and disease
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.767
H-Index - 67
eISSN - 1945-0826
pISSN - 1049-510X
DOI - 10.18865/ed.29.2.309
Subject(s) - snowball sampling , stakeholder , delphi method , psychology , public relations , perception , nonprobability sampling , medical education , political science , medicine , environmental health , statistics , mathematics , pathology , neuroscience , population
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.Ethn Dis. 2019;29(2):309- 316. doi:10.18865/ed.29.2.309