The Role of an Ethics Committee in Co-Produced Research: The Experience of The Disability Research on Independent Living and Learning (Drill) Project

Abstract

This chapter explores the role of an ethics committee led by disabled academics, in supporting co-produced disability research beyond academia, in the context of a five-year research programme in the UK (2015–2020). This chapter includes reflections by the Ethics Committee members, alongside documentary research which analysed the communications between the Ethics Committee and the research projects it supported. This review of the role of the Ethics Committee showed that there were dilemmas in considering the boundaries between ethical review and providing pedagogic advice on research design, and in balancing its role in supporting and regulating research. Ethics review processes are sometimes seen as overly bureaucratic and as an obstacle course for researchers, and this was also sometimes the case for projects supported by the DRILL (Disability Research on Independent Living and Learning) Ethics Committee. Lessons to be learned from the process included that communication between ethics committees and researchers is key, and that ethics review can be a two-way process, recognising the expertise of both the researchers and the reviewers, thus mirroring the principles of co-production. We suggest that an alternative model for ethics review process could build on this generally positive experience of the DRILL Ethics Committee.

Citation

Koslowski, A., Byrne, B., Gulland, J. and Scott, P. (2024), "The Role of an Ethics Committee in Co-Produced Research: The Experience of The Disability Research on Independent Living and Learning (Drill) Project", Good, A., Elliott, I. and Mallon, S. (Ed.) Advances in Disability Research Ethics (Advances in Research Ethics and Integrity, Vol. 11), Emerald Publishing Limited, Leeds, pp. 113-135. https://doi.org/10.1108/S2398-601820240000011007