Protecting and empowering adults with capacity-affecting conditions to take part in health and health-related research.
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 Engla...
| Publicado en: | Disability & Society Vol. 40; no. 2; pp. 281 - 300 |
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| Autores principales: | , , , , , , |
| Formato: | research Journal Article |
| Publicado: |
Taylor & Francis Ltd
Feb2025
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| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=182791018&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 182791018 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 09687599 56A jtl: Disability & Society issn: 09687599 maglogo: N pubinfo: dt: Feb2025 vid: 40 iid: 2 pid: 377 pub: Taylor & Francis Ltd place: Philadelphia, Pennsylvania artinfo: ui: 182791018 174656238 182791018 182791018 10.1080/09687599.2023.2287411 182791018 ppf: 281 ppct: 19 formats: tig: atl: Protecting and empowering adults with capacity-affecting conditions to take part in health and health-related research. aug: au: Redley, Marcus Heywood, Rob Ryan, Hayley Killett, Anne Jimoh, Oluseyi F. Langdon, Peter E. Bunning, Karen affil: School of Health Sciences, University of East Anglia, Norwich, UK sug: subj: Health Services Research Empowerment Competence (Legal) Legislation and Jurisprudence Protection of Human Subjects Research Subjects Human Funding Source Adult Interviews Research Personnel Wales England Adult: 19-44 years ab: 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. Points of interest: Adults with capacity-affecting conditions are often judged as unable to give or withhold consent and are routinely excluded from participating in biomedical and clinical research. Denying this group an opportunity to participate in research reduces the possibility of them benefiting from both new treatments and improvements in healthcare. The Mental Capacity Act England and Wales 2005 provides a legal framework for involving adults with capacity-affecting conditions in research where consent is a legal requirement. Interviews with researchers and those responsible for ensuring the Mental Capacity Act England and Wales 2005 revealed that it is poorly understood and that there are no reliable means of ensuring the Act is fully implemented. pubtype: Academic Journal doctype: research Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
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