- Dr Karen BunningUniversity of East Anglia
- Professor Rob HeywoodUniversity of East Anglia
- Dr Simon HortonUniversity of East Anglia
- Professor Peter LangdonUniversity of Kent
There are practical, methodological and ethical challenges in undertaking empirical research studies, which include adults with limited mental or communication capacity, resulting in underrepresentation of these groups in research. This project aims to develop an ethically sound, legally robust strategy for including adults with impairment of capacity and/or communication, within the context of existing legislation.
Research involving a wide spectrum of the population is essential for developing new knowledge. Gaining informed consent is one of the prerequisites of such research. As developments in medicine mean people are living longer, the incidence of cognitive impairment affecting capacity and communication (e.g.: as a result of dementia) also increases. The proportion of vulnerable people requiring support with decision-making is increasing. This has the potential to pose ethical questions about such individual’s inclusion in research studies.
The researchers propose that whilst legal, ethical and regulatory frameworks governing capacity and consent are addressed under the Mental Capacity Act (MCA), 2005 and accompanying Code of Practice, some researchers and ethics committees find it easier to err on the side of caution, and exclude people who seem unable to provide informed consent. This project will investigate how adults with such impairments are considered and included within ethical and governance frameworks in England and Wales. They will also assess current practice in the development and ethical review of research featuring adults with impairment of capacity and/or communication.
The project aims to produce structured, evidence-based guidance on involving adults with impairments in ethically sound research, which is relevant to the research community and wider public. As a result of the project, researchers will also propose amendments to the MCA Code of Practice.
- Project websitehttp://www.uea.ac.uk/assent
- Lost Voices in Research: Exposing the Gaps in the Mental Capacity Act 2005, Rob Heywood, Hayley Ryan, Anne Killett, Peter Langdon, Yvonne Plenderleith, Ciara Shiggins and Karen Bunning. Medical Law Internationalhttps://journals.sagepub.com/doi/abs/10.1177/0968533219867365?journalCode=mlia01 August 19