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

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.

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.