Research collaborations between academics and people with learning disabilities can strengthen the ethical integrity of research

Analysis showed significant lack of robust evidence on impact or cost effectiveness

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

What Is Right? Ethics in Intellectual Disabilities Research. McDonald, K. & Kidney, C., in Journal of Policy and Practice in Intellectual Disabilities, 9: 27–39.

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John Northfield

After qualifying as a social worker, John worked in community learning disability teams before getting involved in a number of long-stay hospital closure programmes, working to develop individual plans for people moving into their own homes. He worked for BILD, helping to develop the Quality Network and was editorial lead for the NHS electronic library learning disabilities specialist collection. This led him to found the Learning Disabilities Elf site with Andre Tomlin as a way of making the evidence accessible to practitioners in health and social care. Most recently he has worked as part of Mencap's national quality team and also been involved in a number of national website developments, including the General Medical Council's learning disabilities site.

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