Protecting and empowering adults with capacity-affecting conditions to take part in health and health-related research

Redley, Marcus ORCID: https://orcid.org/0000-0001-8866-7990, Heywood, Rob, Ryan, Hayley, Killett, Anne ORCID: https://orcid.org/0000-0003-4080-8365, Jimoh, Oluseyi F. ORCID: https://orcid.org/0000-0003-4296-2729, Langdon, Peter E. ORCID: https://orcid.org/0000-0002-7745-1825 and Bunning, Karen ORCID: https://orcid.org/0000-0002-7396-9205 (2024) Protecting and empowering adults with capacity-affecting conditions to take part in health and health-related research. Disability & Society. ISSN 0968-7599

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Abstract

Health research is essential if people are to enjoy the highest attainable standard of health and healthcare. Yet, persons with capacity-affecting conditions are routinely excluded from research, as they are often judged to lack the capacity to give consent. Focusing on the Mental Capacity Act England and Wales 2005 (MCA), which regulates research involving adults judged to lack capacity, we outline the provision of the MCA and then describe the process of ethical review designed to ensure compliance with these provisions; 2) present findings from interviews with members of the committees responsible for ethical review and with researchers, who have experience of working with the MCA; 3) discuss the implications of these findings for the inclusion of adults lacking capacity in research as well as drawing conclusions about the effectiveness of the MCA.

Item Type:	Article
Faculty \ School:	Faculty of Medicine and Health Sciences > School of Health Sciences Faculty of Social Sciences > School of Law Faculty of Medicine and Health Sciences > Norwich Medical School
UEA Research Groups:	Faculty of Medicine and Health Sciences > Research Groups > Dementia & Complexity in Later Life Faculty of Medicine and Health Sciences > Research Centres > Lifespan Health Faculty of Medicine and Health Sciences > Research Groups > Rehabilitation
Depositing User:	LivePure Connector
Date Deposited:	05 Jan 2024 01:50
Last Modified:	20 Jan 2024 01:34
URI:	https://ueaeprints.uea.ac.uk/id/eprint/94071
DOI:	10.1080/09687599.2023.2287411

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