Table 2. Challenges Associated with Upholding Four Key Principles of Ethical Community-Engaged Research*.
Embodying Ethical Action |
Addressing historical legacy of unethical research |
Respecting Participants |
Maintaining confidentiality across participants' multiple roles |
Being sensitive, responsive to partners' perspectives; culturally appropriate |
Pursuing ongoing communication (e.g., deepening understanding, discussing disagreements) |
Generalizing Beneficence |
Achieving substantive roles for partners in research tasks and decision-making |
Managing conflicting priorities that compete with research activities |
Obtaining funding for time needed to pursue partnering |
Devising alternatives or justifications for randomization or a control arm |
Managing work burden of community partners |
Modifying survey instruments for cultural appropriateness |
Reaching agreement on composition of partnership and compensation |
Addressing problems uncovered during research activities |
Achieving equitable benefits for all involved participants |
Negotiating Justice |
Managing reluctance of community stakeholders to engage in research |
Staying aligned with study vision over time |
Ascertaining the adequacy of success in partnering, trust |
Publicly representing research aims and findings such that all partners agree |
Maintaining objectivity and scientific equipoise |
each challenge mentioned by at least 3 and less than 12 of 29 interviewees; listed from most to least frequent under each principle