MCCLIMENS, Alex and ALLMARK, Peter (2011). A problem with inclusion in learning disability research. Nursing Ethics. [Article]
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3697:3260
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.
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