Are people with Intellectual and Developmental Disabilities who lack capacity to consent at risk of being excluded from research? Ethical implications of the UK Mental Capacity Act 2005

Nicole Palmer, Rachel Forrester-Jones

Research output: Contribution to conferenceAbstractpeer-review

Abstract

Background: The Mental Capacity Act 2005 (MCA) came into force in 2007. It covers ‘intrusive’ research involving participants who lack capacity, that is, any research that would normally require the consent of a participant in order to be lawful. The Act requires NHS REC review for this research
and has thus brought a large section of social care research, including that seeking to involve people with intellectual and developmental disabilities (IDD), into a formalised regulatory process which has been designed to deal with interventional clinical research (Dingwall 2006; Haggerty 2004; Parker et
al. 2001). Establishment of the Social Care REC in 2009 was intended to provide specialised knowledge and expertise for social science research applications falling within the MCA, but there is concern that people with IDD are still at risk of being excluded from research participation.
Method: Retrospective review and content analysis of REC decision-letters for applications involving people with IDD who lack capacity to consent, over a three-year period. In-depth interviews with researchers who have experienced REC review of projects seeking to involve people with IDD.
Results: The most common issue raised in REC decision-letters was methodological questions.
Interviewees report experiencing a ‘challenging’, ‘confrontational’ and ‘disproportionate’ ethical review process that has directly led to decisions to exclude people with IDD from their research projects.
Conclusion: Improvements in knowledge and skills for both REC reviewers and researchers are likely to lead to better inclusivity in research for people with IDD who lack capacity to consent.
Original languageEnglish
Pages8-9
Number of pages2
Publication statusPublished - 13 Dec 2016
Event16th Seattle Club Conference - Glasgow Caledonian University, Glasgow, UK United Kingdom
Duration: 12 Dec 201613 Dec 2016
Conference number: 16
http://www.seattleclubconference.org/pdfs/16th%20Seattle%20Club%20abstracts.pdf

Conference

Conference16th Seattle Club Conference
Country/TerritoryUK United Kingdom
CityGlasgow
Period12/12/1613/12/16
Internet address

Keywords

  • Capacity to consent
  • intellectual disabilities
  • Mental Capacity Act 2005

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