Capacity to consent to participate in research – a recontextualization

Summary Capacity to consent is an important concept when working with people with learning disabilities. The current concept of consent is based on a dichotomous categorization: people either have or do not have capacity to consent. Several research studies have focused on the assessment of capacity to consent and these studies report a range from 0 to 65% of people with learning disabilities identified as having capacity to consent. Findings from these studies reflect several limitations with the current concept of consent. A recontextualization is needed in order to address these limitations. This should include the concept of risk and benefit assessment, i.e. the seriousness of the consequences involved determines the level of capacity needed for a specific decision. Moreover, the emergence of participatory research paradigms in the field of learning disabilities further challenges the validity of such concepts of consent. Therefore, it is proposed that it is more helpful to present the concept of capacity to consent within a broader contextual framework rather than as a unitary dichotomous categorization.