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.
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 | |
| 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