The Ethical Imperative of Inclusivity in CBPR: Shared Experience of Science Shop Projects of InSPIRES Consortium

Science Shops (SSs) represent a Community-Based Participatory Research (CBPR) model that fosters collaboration between community organizations and research institutions. This model highlights the growing importance of ethics in such projects. The study aims to identify and analyse ethical challenges encountered during the implementation of Science Shop projects within the InSPIRES consortium. Eight pilot projects conducted by InSPIRES Science Shops were selected for a qualitative assessment of ethical practices and challenges in CBPR. Semi-structured interviews were conducted with SS coordinators, principal investigators, and Civil Society Organization (CSO) partners. Findings revealed a high level of participation from CSOs in six of the eight projects, pri-marily in participant recruitment. However, scientific questions originating from these or-ganizations were adopted in only two projects, indicating limited involvement in the re-search process. Regarding participant consent, three institutions adapted consent forms for vulnerable participants. Data and results were shared between CSOs and academic partners in four projects, and formal partnership agreements were established in only three of the eight SSs. For successful implementation of SS projects addressing community-driven research, all partners must agree on a formal, inclusive, and participatory process, including a well-structured plan for data sharing and dissemination. These findings offer guidance for future CBPR initiatives.