Reflecting on an unexpected challenge in obtaining ethical approval for research with adults with learning disabilities

Abstract

Obtaining ethical approval for my PhD research with adults with learning (intellectual) disabilities presented an unexpected challenge of learning to work with two sets of guidance: the United Nations Convention on the Rights of Persons with Disabilities (CRPD), and the Ethical Conduct in Human Research and Related Activities Regulations (HRR). The CRPD binds States Parties to progress equal rights for people with disabilities of which Article 12, equal recognition before the law, disconnects mental capacity from legal capacity. The HRR protects participants, researchers and institutions and recognises mental capacity as a component of informed consent. In applying the CRPD and the HRR as complementary safeguards, and looking through the lens of edgewalking, I gained an appreciation for positively encountering complexity and incorporating multiple points of view. This article will describe how my challenging experience enabled skill building to develop a more strategic academic voice and will be of interest to student and other researchers.