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Capacity of People with Intellectual Disabilities to Consent to Take Part in a Research Study

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Background 

Within the context of current legislation relating to mental capacity in adults, the capacity of people with intellectual disabilities to consent to take part in research studies and the impact of different forms of information provision was experimentally investigated. Materials and methods 

A questionnaire measure of ability to consent to take part in this research study was administered individually to participants. A total of 102 participants with intellectual disabilities were recruited from three day services for adults with intellectual disabilities. Consent information appertaining to taking part in an actual research project was presented to participants and their capacity assessed using a questionnaire. Three experimental conditions were used:

•  Control (n = 34) – consent information was presented followed by the questionnaire.

•  Section (n = 34) – consent information was broken into sections and the appropriate questions were asked following each section.

•  Photograph (n = 34) – consent information was accompanied by six colour photographs, followed by the questionnaire.

Participants also completed measures of memory ability, verbal ability and non-verbal problem-solving ability. Results 

Seventeen participants withdrew from the study at some point. Of the remaining 85 participants, no significant differences in ability to consent scores were found between the experimental conditions. Using this measure, only five participants (5.9%) were deemed able to consent, i.e. scored the minimum required on each aspect of consent. Conclusions 

The validity and usefulness of the current dichotomous concept of consent is challenged as only a small proportion of participants were deemed able to consent.
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Keywords: consent; intellectual disabilities; research

Document Type: Research Article

Publication date: March 1, 2007

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