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

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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.

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          Most cited references80

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          Why Things Matter to People

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            The tyranny of merit: What’s become of the common good?

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              Critical bioethics: beyond the social science critique of applied ethics.

              This article attempts to show a way in which social science research can contribute in a meaningful and equitable way to philosophical bioethics. It builds on the social science critique of bioethics present in the work of authors such as Renee Fox, Barry Hoffmaster and Charles Bosk, proposing the characteristics of a critical bioethics that would take social science seriously. The social science critique claims that traditional philosophical bioethics gives a dominant role to idealised, rational thought, and tends to exclude social and cultural factors, relegating them to the status of irrelevancies. Another problem is they way in which bioethics assumes social reality divides down the same lines/categories as philosophical theories. Critical bioethics requires bioethicists to root their enquiries in empirical research, to challenge theories using evidence, to be reflexive and to be sceptical about the claims of other bioethicists, scientists and clinicians. The aim is to produce a rigorous normative analysis of lived moral experience.
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                Author and article information

                Journal
                Clin Ethics
                Clin Ethics
                CET
                spcet
                Clinical Ethics
                SAGE Publications (Sage UK: London, England )
                1477-7509
                1758-101X
                7 April 2022
                December 2023
                : 18
                : 4
                : 418-426
                Affiliations
                [1 ]Social Research Institute, University College London, London, UK
                [2 ]Medical Ethics, Ringgold 4915, universitySt George’s Hospital, London; , UK
                [3 ]Ringgold 4956, universityGreat Ormond Street Children’s Hospital; , London, UK
                [4 ]Cardiothoracic Surgery, University College London, London, UK
                [5 ]Faculty of Law, University College London, London, UK
                Author notes
                [*]Priscilla Alderson, Social Research Institute, University College London, 18 Woburn Square, London WC1H 0NR, UK. Email: p.alderson@ 123456ucl.ac.uk
                Author information
                https://orcid.org/0000-0003-4002-4501
                https://orcid.org/0000-0003-0919-6882
                Article
                10.1177_14777509221091086
                10.1177/14777509221091086
                10654030
                3196cd74-5ebb-4efa-9982-4484c245b33a
                © The Author(s) 2022

                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).

                History
                Funding
                Funded by: British Heart Foundation, FundRef https://doi.org/10.13039/501100000274;
                Award ID: PG/18/22/33604
                Categories
                Empirical Ethics
                Custom metadata
                ts19

                Ethics
                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

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