Beyond protection: institutional ableism, epistemic inclusion, and the participation of adults with intellectual and developmental disabilities in higher education research

Inclusion of adults with intellectual and developmental disabilities in research is increasingly recognized as a matter of rights, equity, and research quality. This qualitative study examined how research governance structures influence participation through interviews with fourteen adults with intellectual and developmental disabilities and twenty-two researchers and ethics committee members across Israeli higher education institutions. Data were analyzed using a grounded theory-informed thematic approach. Findings identified institutional, procedural, communication, and attitudinal barriers, including inconsistent ethics procedures, limited accessibility, insufficient researcher training, and overprotective practices. The study proposes six principles for disability-inclusive research governance and calls for greater participation and inclusion of adults with intellectual and developmental disabilities in research.