Researching the Mental Capacity Act 2005: reflections on governance, field relationships, and ethics with an adult who did not consent

Abstract

The Mental Capacity Act 2005 codified procedures for involving incapacitated adults in research, set out statutory cognitive assessments, and established legality for studies in which participants cannot consent to their participation. While the general debates about the efficacy of Research Governance Frameworks are polarized and rehearsed, little has been written about the ethics and field relations of qualitative research with adults lacking capacity. Drawing on data from fieldwork with Abrax, a young man classified as ‘profoundly learning disabled’ who did not communicate verbally and required support to meet his physical needs, the process of seeking ethical approval is described. There is also a reflection on developing a relationship with Abrax, assessing his mental capacity to partake in research; and dealing with the ethical implications of uncertainty about his decision-making abilities. The thrust of the paper is support for the principle of regulating research with incapacitated adults while making the argument that a relationship-based ethical approach is a necessary augmentation to the current framework.

Keywords:

• Mental Capacity Act 2005
• Research Governance Framework
• learning disability
• appropriate body
• black and minority ethnic service users
• ethnography
• case study methodology

Notes

1. Pseudonyms are used in this paper to preserve anonymity and confidentiality of individuals and organizations.

2. DoLS was added to the MCA to make detention of vulnerable adults for care purposes compliant with the European Convention on Human Rights (Ministry of Justice and DoH 2008, Hargreaves 2010).