Including adults with intellectual disabilities who lack capacity to consent in research

The Mental Capacity Act 2005 has stipulated that in England and Wales the ethical implications of carrying out research with people who are unable to consent must be considered alongside the ethical implications of excluding them from research altogether. This paper describes the methods that were u...

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Bibliographic Details
Main Author: Calveley (née Clark), Julie (Author)
Format: Electronic Article
Language:English
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Published: Sage 2012
In: Nursing ethics
Year: 2012, Volume: 19, Issue: 4, Pages: 558-567
Further subjects:B Ethnography
B Informed Consent
B intellectual disabilities
B intimate care
B capacity to consent
B research ethics
B Mental Capacity Act 1995
Online Access: Volltext (lizenzpflichtig)
Description
Summary:The Mental Capacity Act 2005 has stipulated that in England and Wales the ethical implications of carrying out research with people who are unable to consent must be considered alongside the ethical implications of excluding them from research altogether. This paper describes the methods that were used to enable people with severe and profound intellectual disabilities, who lacked capacity, to participate in a study that examined their experience of receiving intimate care. The safeguards that were put in place to protect the rights and well-being of participants are described, and it is argued that the approaches used in this study met the requirements set out in the Mental Capacity Act 2005. Although this paper is based on research involving people with intellectual disabilities, it has implications for research involving other groups who may also lack capacity to consent, including people with mental health problems, head injuries and dementia.
ISSN:1477-0989
Contains:Enthalten in: Nursing ethics
Persistent identifiers:DOI: 10.1177/0969733011426818