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

N. Palmer; Rachel Forrester-Jones

doi:10.1111/jir.12305

Abstract

Aim: This study investigates the ways in which peoplewith intellectual and developmental disabilities (IDD) who lack capacity to consent are at risk of beingexcluded from research.

Method: A retrospectivereview and content analysis of research ethics applications concerning people with IDD who lackcapacity to consent, over a three-year period wasundertaken. In-depth interviews with six researchersregarding their decisions to exclude people with IDDfrom their samples were also conducted.

Results: Consideration of the ethical approval process appears toaffect sampling decisions. Conclusion: Improvedknowledge and skills in navigating research ethics andintegrity is likely to increase conﬁdence to includeparticipants who lack capacity to consent in researchprojects.

Original language	English
Pages (from-to)	805
Number of pages	1
Journal	Journal of Intellectual Disability Research
Volume	60
Issue number	7-8
DOIs	https://doi.org/10.1111/jir.12305
Publication status	Published - 31 Jul 2016
Event	International Association of the Scientific Study of Intellectual & Developmental Disabilities, World Congress, 15-19 Aug 2016, Melbourne, Australia - Melbourne, Australia Duration: 15 Aug 2016 → 19 Aug 2016

Keywords

capacity to consent
intellectual disabilities

Access to Document

10.1111/jir.12305

https://kar.kent.ac.uk/61333/

Cite this

@article{8f2cddeb55b94ab4bd6477b2a05d7285,

title = "Are people with IDD who lack capacity to consent at risk of being excluded from research? Ethical implications of the UK Mental Capacity Act 2005.",

abstract = "Aim: This study investigates the ways in which peoplewith intellectual and developmental disabilities (IDD) who lack capacity to consent are at risk of beingexcluded from research. Method: A retrospectivereview and content analysis of research ethics applications concerning people with IDD who lackcapacity to consent, over a three-year period wasundertaken. In-depth interviews with six researchersregarding their decisions to exclude people with IDDfrom their samples were also conducted. Results: Consideration of the ethical approval process appears toaffect sampling decisions. Conclusion: Improvedknowledge and skills in navigating research ethics andintegrity is likely to increase conﬁdence to includeparticipants who lack capacity to consent in researchprojects.",

keywords = "capacity to consent, intellectual disabilities",

author = "N. Palmer and Rachel Forrester-Jones",

year = "2016",

month = jul,

day = "31",

doi = "10.1111/jir.12305",

language = "English",

volume = "60",

pages = "805",

journal = "Journal of Intellectual Disability Research",

issn = "0964-2633",

publisher = "Wiley-Blackwell Publishing Ltd",

number = "7-8",

note = "International Association of the Scientific Study of Intellectual \& Developmental Disabilities, World Congress, 15-19 Aug 2016, Melbourne, Australia , IASSID World Congress 2016 ; Conference date: 15-08-2016 Through 19-08-2016",

}

TY - JOUR

T1 - Are people with IDD who lack capacity to consent at risk of being excluded from research? Ethical implications of the UK Mental Capacity Act 2005.

AU - Palmer, N.

AU - Forrester-Jones, Rachel

PY - 2016/7/31

Y1 - 2016/7/31

N2 - Aim: This study investigates the ways in which peoplewith intellectual and developmental disabilities (IDD) who lack capacity to consent are at risk of beingexcluded from research. Method: A retrospectivereview and content analysis of research ethics applications concerning people with IDD who lackcapacity to consent, over a three-year period wasundertaken. In-depth interviews with six researchersregarding their decisions to exclude people with IDDfrom their samples were also conducted. Results: Consideration of the ethical approval process appears toaffect sampling decisions. Conclusion: Improvedknowledge and skills in navigating research ethics andintegrity is likely to increase conﬁdence to includeparticipants who lack capacity to consent in researchprojects.

AB - Aim: This study investigates the ways in which peoplewith intellectual and developmental disabilities (IDD) who lack capacity to consent are at risk of beingexcluded from research. Method: A retrospectivereview and content analysis of research ethics applications concerning people with IDD who lackcapacity to consent, over a three-year period wasundertaken. In-depth interviews with six researchersregarding their decisions to exclude people with IDDfrom their samples were also conducted. Results: Consideration of the ethical approval process appears toaffect sampling decisions. Conclusion: Improvedknowledge and skills in navigating research ethics andintegrity is likely to increase conﬁdence to includeparticipants who lack capacity to consent in researchprojects.

KW - capacity to consent

KW - intellectual disabilities

U2 - 10.1111/jir.12305

DO - 10.1111/jir.12305

M3 - Meeting abstract

SN - 0964-2633

VL - 60

SP - 805

JO - Journal of Intellectual Disability Research

JF - Journal of Intellectual Disability Research

IS - 7-8

T2 - International Association of the Scientific Study of Intellectual & Developmental Disabilities, World Congress, 15-19 Aug 2016, Melbourne, Australia

Y2 - 15 August 2016 through 19 August 2016

ER -

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

Abstract

Keywords

Access to Document

Fingerprint

Cite this