Misunderstanding and Overprotection: The Impact of Research Ethics Committees on Social Disability Studies in Chile

This study explores the experiences of researchers in Chile when submitting disability-related projects to Research Ethics Committees. Through a qualitative approach involving 18 semi-structured interviews with researchers, the study identifies the barriers that arise from applying existing ethical frameworks to social research on disability. The results reveal a “presumption of incapacity” toward people with disabilities—an infantilizing and overprotective view that leads to excessive and detrimental requirements. Key findings highlight the questioning of the capacity to consent, the medicalization of disability, and the imposition of third parties in decision-making processes. These practices impact research by altering methodologies, excluding people with disabilities from studies, causing burnout within research teams, and limiting the production of evidence relevant to public policy. The study underscores the need to move toward more flexibility, integrating a rights-based perspective and the necessary supports to ensure the full and effective participation of people with disabilities in research.