Ethical support in citizen science for health

Abstract

Citizen science for health (CS4H) increasingly involves citizens as active contributors and more often as researchers themselves. It raises ethical challenges that are not well supported by existing ethics review and support systems. This paper explores how CS-community members view these challenges and what kinds of ethics support they consider most useful. We organised a 30‑minute ‘Solution Room’ session at the international CS4H-conference, bringing together participants with diverse experiences. Using a structured, multi‑round process, participants generated ideas, organised them in an Impact–Effort-matrix, prioritised promising directions, and jointly reflected on possible forms of ethics support. Participants identified a wide range of possible solutions, focusing on practical and feasible forms of ethics support, such as involving citizens in ethics review boards, creating multiprofessional or modular review structures, and offering tools, knowledge and training. Other proposals addressed broader system level issues, including recognition of CS4H, equity‑based approaches, and coordination beyond individual institutions. The findings suggest that improving ethical practice in CS4H requires ethics support systems that are proactive, inclusive, and adaptable.