Cargando…
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...
Autores principales: | , , , |
---|---|
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 |
_version_ | 1785040411676377088 |
---|---|
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. |
format | Online Article Text |
id | pubmed-10176337 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2023 |
publisher | BMJ Publishing Group |
record_format | MEDLINE/PubMed |
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 |
work_keys_str_mv | AT lylekate beyondregulatoryapproachestoethicsmakingspaceforethicalpreparednessinhealthcareresearch AT wellersusie beyondregulatoryapproachestoethicsmakingspaceforethicalpreparednessinhealthcareresearch AT samuelgabby beyondregulatoryapproachestoethicsmakingspaceforethicalpreparednessinhealthcareresearch AT lucassenannekem beyondregulatoryapproachestoethicsmakingspaceforethicalpreparednessinhealthcareresearch |