Does Honouring Assent Really Respect the Preferences and Values of Research Participants with Intellectual and Developmental Disabilities?

Abstract

Processes of representative consent and individual assent for those with intellectual and developmental disabilities (IDD) in the research context are intended to protect such individuals from the power imbalance between participants and researchers. However, these protections often lead to exclusionary practices, leaving those with IDD without the opportunity to reap the same benefits from research as other, less vulnerable populations. Current conversations regarding research ethics heavily emphasize relying on participant assent as the solution to exclusionary research practices, as obtaining assent best respects the preferences and values of participants. In response to such arguments, we propose that the extent to which assent serves as a remedy to issues of those with IDD in research is unclear.