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Living bioethics, theories and children’s consent to heart surgery

Alderson, Priscilla; Bowman, Deborah; Brierley, Joe; Dedieu, Nathalie; Elliott, Martin J; Montgomery, Jonathan; Wellesley, Hugo; (2022) Living bioethics, theories and children’s consent to heart surgery. Clinical Ethics 10.1177/14777509221091086. (In press). Green open access

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Abstract

Background: This analysis is about practical living bioethics and how law, ethics and sociology understand and respect children’s consent to, or refusal of, elective heart surgery. Analysis of underlying theories and influences will contrast legalistic bioethics with living bioethics. In-depth philosophical analysis compares social science traditions of positivism, interpretivism, critical theory and functionalism and applies them to bioethics and childhood, to examine how living bioethics may be encouraged or discouraged. Illustrative examples are drawn from research interviews and observations in two London paediatric cardiac units. This paper is one of a series on how the multidisciplinary cardiac team members all contribute to the complex mosaic of care when preparing and supporting families’ informed consent to surgery. Results: The living bioethics of justice, care and respect for children and their consent depends on theories and practices, contexts and relationships. These can all be undermined by unseen influences: the history of adult-centric ethics; developmental psychology theories; legal and financial pressures that require consent to be defined as an adult contract; management systems and daily routines in healthcare that can intimidate families and staff; social inequalities. Mainstream theories in the clinical ethics literature markedly differ from the living bioethics in clinical practices. Conclusion: We aim to contribute to raising standards of respectful paediatric bioethics and to showing the relevance of virtue and feminist ethics, childhood studies and children’s rights.

Type: Article
Title: Living bioethics, theories and children’s consent to heart surgery
Open access status: An open access version is available from UCL Discovery
DOI: 10.1177/14777509221091086
Publisher version: https://doi.org/10.1177%2F14777509221091086
Language: English
Additional information: https://creativecommons.org/licenses/by/4.0/This article is distributed under the terms of the Creative Commons Attribution 4.0 License (https://creativecommons.org/licenses/by/4.0/) which permits any use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access page (https://us.sagepub.com/en-us/nam/open-access-at-sage).
Keywords: Philosophical aspects, bioethics and medical ethics, clinical ethics, minors, care for specific groups, health care quality, health care, informed consent, professional ethics in medicine, professional ethics in nursing
UCL classification: UCL
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > UCL GOS Institute of Child Health
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
URI: https://discovery.ucl.ac.uk/id/eprint/10147584
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