The involvement of people with learning disabilities in research has been increasing. The authors of this review stress the important benefits of this inclusion. However, the involvement raises a number of ethical questions, as they can be vulnerable in the context of research.
This review looked at peer-reviewed literature on ethical practices in research with adults with learning disabilities to try to identify and analyse the ethical approaches used
37 articles met their inclusion criteria and they conducted a thematic analysis of these papers.
Three overarching themes emerged from that analysis
- Guiding frameworks and approaches
- Strategies to promote accountability to ethics
- Making decisions about participation, including
- considerations for coercion,
- capacity to consent,
- surrogate decision-making,
- promoting understanding.
There were a number of quite diverse recommendations for ethical research practices which were “characterised by a lack of consensus, entrenched tensions in value orientations, and gaps in knowledge and practice.”
There were a number of discussions in the literature emphasising attention to strengths, autonomy, dignity of risk, and a contextually based framing of capacity to consent. The authors also suggest a key role for a range of accommodations to promote participation.
They make some recommendations for future areas of research, including a systematic study of the diverse ethical aspects of research and a focus on the identification and consideration of the perspectives of people with learning disabilities.
A video abstract of this article can be viewed at http://youtu.be/5Oqx02Aw3xs
What Is Right? Ethics in Intellectual Disabilities Research. McDonald, K. & Kidney, C., in Journal of Policy and Practice in Intellectual Disabilities, 9: 27–39.