The University of Southampton
University of Southampton Institutional Repository

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

Beyond regulatory approaches to ethics: making space for ethical preparedness in healthcare research
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 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.
Ethics, Ethics Committees, Ethics- Research, Informed Consent
1473-4257
Lyle, Kate
ff88e501-884c-423a-8050-f915fc19f0a8
Weller, Susie
6ad1e079-1a7c-41bf-8678-bff11c55142b
Samuel, Gabby
dd9c127c-6a6b-4cd8-8c65-f13f985dfdf0
Lucassen, Anneke M.
2eb85efc-c6e8-4c3f-b963-0290f6c038a5
Lyle, Kate
ff88e501-884c-423a-8050-f915fc19f0a8
Weller, Susie
6ad1e079-1a7c-41bf-8678-bff11c55142b
Samuel, Gabby
dd9c127c-6a6b-4cd8-8c65-f13f985dfdf0
Lucassen, Anneke M.
2eb85efc-c6e8-4c3f-b963-0290f6c038a5

Lyle, Kate, Weller, Susie, Samuel, Gabby and Lucassen, Anneke M. (2022) Beyond regulatory approaches to ethics: making space for ethical preparedness in healthcare research. Journal of Medical Ethics, [108102]. (doi:10.1136/medethics-2021-108102).

Record type: Article

Abstract

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.

Text
medethics-2021-108102.full - Version of Record
Available under License Creative Commons Attribution.
Download (266kB)

More information

Accepted/In Press date: 23 May 2022
e-pub ahead of print date: 20 June 2022
Published date: 20 June 2022
Additional Information: Funding Information: This study was funded by Wellcome Trust (208053/Z/17/Z). Publisher Copyright: © Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.
Keywords: Ethics, Ethics Committees, Ethics- Research, Informed Consent

Identifiers

Local EPrints ID: 467758
URI: http://eprints.soton.ac.uk/id/eprint/467758
ISSN: 1473-4257
PURE UUID: d40c18dc-747e-4785-8280-ef8d12b29ec6
ORCID for Susie Weller: ORCID iD orcid.org/0000-0002-6839-876X
ORCID for Anneke M. Lucassen: ORCID iD orcid.org/0000-0003-3324-4338

Catalogue record

Date deposited: 21 Jul 2022 17:04
Last modified: 01 Mar 2023 02:47

Export record

Altmetrics

Contributors

Author: Kate Lyle
Author: Susie Weller ORCID iD
Author: Gabby Samuel

Download statistics

Downloads from ePrints over the past year. Other digital versions may also be available to download e.g. from the publisher's website.

View more statistics

Atom RSS 1.0 RSS 2.0

Contact ePrints Soton: eprints@soton.ac.uk

ePrints Soton supports OAI 2.0 with a base URL of http://eprints.soton.ac.uk/cgi/oai2

This repository has been built using EPrints software, developed at the University of Southampton, but available to everyone to use.

We use cookies to ensure that we give you the best experience on our website. If you continue without changing your settings, we will assume that you are happy to receive cookies on the University of Southampton website.

×