Do current consent and confidentiality requirements impede or enhance research with children with learning disabilities?

Abstract

Recent changes in UK legislation on data protection and confidentiality have affected key aspects of the research process. They have led to much stricter approaches to research governance, leading in turn to more stringent scrutiny by medical ethics committees and National Health Service (NHS) Trusts. Almost all stages of research are affected, from participant recruitment to storage of data, eating into researcher time and consuming significant resources. The resulting constraints are examined in relation to a research programme on development in children with learning disabilities, highlighting the practical and ethical issues arising, with informed consent a particular challenge. Being multidisciplinary, learning disability research has to satisfy numerous regulatory bodies. For participants’ rights to be fully respected and for projects to be completed within time and on budget, all contributors to the research process, including funders, need to be aware of the additional implications and demands imposed by the new regulations.

Acknowledgements

The authors gratefully acknowledge the support of the Medical Research Council (Grant nos. G000324/5) for this research. The authors also wish to express their thanks to the following people for their advice and support in this work: Katie Williams, Diane Willis, Walter Muir, Tom Pitcairn, the research programme’s Advisory Group (Sally Cheseldine, Pat Jackson, Mary O’Brien, Kirsten Stalker, Linda Scott, Kay Tisdall, Anna van der Gaag, Karen Watchman), Zoe Dunhill, Stewart McCarroll, Jack McAulay, Sarah Burnett, the head teachers in Edinburgh and the Lothians who supported this work and the many NHS staff with whom we found our joint ways through the new legal requirements. Most of all, we thank the children and parents who participated in the research programme and who generously tolerated the never‐ending paperwork.