Ethics and Science in the Participatory Era

Participatory researchers rely on relationship-based ethical considerations to address ethical challenges, but little is known about how these considerations shape day-to-day decision-making. We presented vignettes describing ethical dilemmas to health researchers with varying degrees of experience in participatory research in an online modified-Delphi panel. Panelists rated potential solutions to dilemmas and provided rationales for choosing solutions in text boxes and discussion boards. Panelists agreed on a preferred solution for three of five vignettes. Panelists indicated that ethical research decision-making should be inclusive of diverse perspectives. Panelists prioritized scientific goals above participatory ones and viewed tenets of scientific validity as value-free. Panelists indicated that participatory research ethics would be difficult to codify, but that vignette-based learning could support didactic objectives.