Exploring ethical issues arising from ten years of inclusive research with people with a learning disability

Abstract

Inclusive research enables people with a learning disability, with support, to take a lead role at all stages of the research, including the design, process and dissemination, rather than just contributing to the data collection (Walmsley and Johnson, 2003). In 2010 a short-term research project enabled a group of people with a learning disability to ‘research their own lives’. An unexpected outcome was that the members greatly valued the opportunity to tell their stories and wanted to continue. Ten years later the group continues to research issues affecting them and their peers from a disability rights (United Nations General Assembly, 2006) and social model of disability perspective. This article is based on the personal observations and reflections of their non-disabled group facilitator and fellow researcher, regarding a range of ethical issues and dilemmas raised by this inclusive research approach. They include anonymity and confidentiality, the need for flexible roles of the group facilitator, including advocate and supporter, and the extent that this conflicts with the role of co-researcher. Power, ownership and control of the research agenda are also discussed.