RT Journal Article
SR Electronic
T1 Beyond regulatory approaches to ethics: making space for ethical preparedness in healthcare research
JF Journal of Medical Ethics
JO J Med Ethics
FD BMJ Publishing Group Ltd and Institute of Medical Ethics
SP medethics-2021-108102
DO 10.1136/medethics-2021-108102
A1 Kate Lyle
A1 Susie Weller
A1 Gabby Samuel
A1 Anneke M Lucassen
YR 2022
UL http://jme.bmj.com/content/early/2022/06/20/medethics-2021-108102.abstract
AB 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.No data are available.