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Beyond regulatory approaches to ethics: making space for ethical preparedness in healthcare research

Centralised, compliance-focused approaches to research ethics have been normalised in practice. In this paper, we argue that the dominance of such systems has been driven by neoliberal approaches to governance, where the focus on controlling and individualising risk has led to an overemphasis of dec...

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Detalles Bibliográficos
Autores principales: Lyle, Kate, Weller, Susie, Samuel, Gabby, Lucassen, Anneke M
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BMJ Publishing Group 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10176337/
https://www.ncbi.nlm.nih.gov/pubmed/35725300
http://dx.doi.org/10.1136/medethics-2021-108102
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author Lyle, Kate
Weller, Susie
Samuel, Gabby
Lucassen, Anneke M
author_facet Lyle, Kate
Weller, Susie
Samuel, Gabby
Lucassen, Anneke M
author_sort Lyle, Kate
collection PubMed
description Centralised, compliance-focused approaches to research ethics have been normalised in practice. In this paper, we argue that the dominance of such systems has been driven by neoliberal approaches to governance, where the focus on controlling and individualising risk has led to an overemphasis of decontextualised ethical principles and the conflation of ethical requirements with the documentation of ‘informed consent’. Using a UK-based case study, involving a point-of-care-genetic test as an illustration, we argue that rather than ensuring ethical practice such compliance-focused approaches may obstruct valuable research. We call for an approach that encourages researchers and research communities—including regulators, ethics committees, funders and publishers of academic research—to acquire skills to make morally appropriate decisions, and not base decision-making solely on compliance with prescriptive regulations. We call this ‘ethical preparedness’ and outline how a research ethics system might make space for this approach.
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spelling pubmed-101763372023-05-13 Beyond regulatory approaches to ethics: making space for ethical preparedness in healthcare research Lyle, Kate Weller, Susie Samuel, Gabby Lucassen, Anneke M J Med Ethics Original Research Centralised, compliance-focused approaches to research ethics have been normalised in practice. In this paper, we argue that the dominance of such systems has been driven by neoliberal approaches to governance, where the focus on controlling and individualising risk has led to an overemphasis of decontextualised ethical principles and the conflation of ethical requirements with the documentation of ‘informed consent’. Using a UK-based case study, involving a point-of-care-genetic test as an illustration, we argue that rather than ensuring ethical practice such compliance-focused approaches may obstruct valuable research. We call for an approach that encourages researchers and research communities—including regulators, ethics committees, funders and publishers of academic research—to acquire skills to make morally appropriate decisions, and not base decision-making solely on compliance with prescriptive regulations. We call this ‘ethical preparedness’ and outline how a research ethics system might make space for this approach. BMJ Publishing Group 2023-05 2022-06-20 /pmc/articles/PMC10176337/ /pubmed/35725300 http://dx.doi.org/10.1136/medethics-2021-108102 Text en © Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ. https://creativecommons.org/licenses/by-nc/4.0/This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/ (https://creativecommons.org/licenses/by-nc/4.0/) .
spellingShingle Original Research
Lyle, Kate
Weller, Susie
Samuel, Gabby
Lucassen, Anneke M
Beyond regulatory approaches to ethics: making space for ethical preparedness in healthcare research
title Beyond regulatory approaches to ethics: making space for ethical preparedness in healthcare research
title_full Beyond regulatory approaches to ethics: making space for ethical preparedness in healthcare research
title_fullStr Beyond regulatory approaches to ethics: making space for ethical preparedness in healthcare research
title_full_unstemmed Beyond regulatory approaches to ethics: making space for ethical preparedness in healthcare research
title_short Beyond regulatory approaches to ethics: making space for ethical preparedness in healthcare research
title_sort beyond regulatory approaches to ethics: making space for ethical preparedness in healthcare research
topic Original Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10176337/
https://www.ncbi.nlm.nih.gov/pubmed/35725300
http://dx.doi.org/10.1136/medethics-2021-108102
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