title: A problem with inclusion in learning disability research.
abstract: People with severe learning disability are particularly difficult to include in the research process. As a result, researchers may be tempted to focus on those with learning disability who can be included. The problem is exacerbated in this field as the political agenda of inclusion and involvement is driven by those people with learning disability who are the higher functioning. To overcome this we should first detach the notion of consent from ideas about autonomy and think instead of it as a way to avoid wronging others; this fits the original historical use of consent in research. This allows us to think in terms of including participants to the best of their abilities rather than in terms of a threshold of autonomy. Researchers could then use imaginative ways to include the least able and to ensure they are not wronged in research or by exclusion from it.
authors.affiliation: Sheffield Hallam University.
authors.forename: Alex
authors.initials: A
authors.lastname: McClimens
authors.forename: Peter
authors.initials: P
authors.lastname: Allmark
mesh_terms: D035843:Biomedical Research / Q000941:ethics* / Q000458:organization & administration; D006801:Humans; D007258:Informed Consent / Q000941:ethics; D007859:Learning Disabilities; D016743:Mental Competency; D018579:Patient Selection / Q000941:ethics*; D026684:Personal Autonomy; D035842:Research Subjects