Research ethics committees and the benefits of involving people with profound and multiple learning disabilities in research

Abstract

Accessible summary People with learning disabilities who do not use speech are often left out of research. Ways of doing research which do not use words (for example, using photographs) might make it easier for them to join in. Ethics committees decide if plans for research projects are good enough. It is important for ethics committees to stop people from being hurt by research. But they also need to know about the positive things that can happen for people with learning disabilities who get involved in research. This article explains what happened when Martha (not her real name), a woman with learning disabilities who did not use speech, got involved in a research project at the hostel where she lived. We hope this article will help researchers and ethics committees think about the positive things that can happen when people with learning disabilities get involved in research. SummaryAlthough there is increasing interest in service user involvement in research, such involvement rarely extends to people with profound and multiple learning disabilities. New developments in visual methodologies offer the potential for people with profound and multiple learning disabilities to be included in research. At the same time, however, tighter regulation of the UK Research Governance Framework and the requirements of the Mental Capacity Act 2005 have increased the complexity of ethical approval processes. In reaching decisions about whether or not to grant approval, ethics committees are obliged to consider the potential harm to research participants and also the potential benefits. This article documents the benefits of involvement for ‘Martha’, who participated in a research project using photographic methods at the hostel where she lived. We hope the article will stimulate debate about ethical approval and the use of creative methodologies in research with people with profound and multiple learning disabilities.