Literature DB >> 22753458

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

Julie Calveley1.   

Abstract

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.

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Year:  2012        PMID: 22753458     DOI: 10.1177/0969733011426818

Source DB:  PubMed          Journal:  Nurs Ethics        ISSN: 0969-7330            Impact factor:   2.874


  4 in total

1.  Parent ratings of ability to consent for clinical trials in fragile X syndrome.

Authors:  Donald B Bailey; Melissa Raspa; Anne Wheeler; Anne Edwards; Ellen Bishop; Carla Bann; David Borasky; Paul S Appelbaum
Journal:  J Empir Res Hum Res Ethics       Date:  2014-07       Impact factor: 1.742

2.  The Convention on the Rights of Persons with Disabilities: a foundation for ethical disability and health research in developing countries.

Authors:  Jo Durham; Claire E Brolan; Bryan Mukandi
Journal:  Am J Public Health       Date:  2014-09-11       Impact factor: 9.308

3.  Contribution of the voluntary sector to mental health crisis care in England: protocol for a multimethod study.

Authors:  Karen Newbigging; John Mohan; James Rees; Jenny Harlock; Alex Davis
Journal:  BMJ Open       Date:  2017-11-08       Impact factor: 2.692

Review 4.  Informed Consent or Assent Strategies for Research With Individuals With Deafblindness or Dual Sensory Impairment: A Scoping Review.

Authors:  Abinethaa Paramasivam; Atul Jaiswal; Renu Minhas; Walter Wittich; Roxanna Spruyt-Rocks
Journal:  Arch Rehabil Res Clin Transl       Date:  2021-02-22
  4 in total

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