Clinical research without consent in adults in the emergency setting: a review of patient and public views

Lecouturier, Jan, Rodgers, Helen, Ford, Gary A, Rapley, Tim, Stobbart, Lynne, Louw, Stephen J and Murtagh, Madeleine J (2008) Clinical research without consent in adults in the emergency setting: a review of patient and public views. BMC Medical Ethics, 9 (1). p. 9. ISSN 1472-6939

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Official URL: https://doi.org/10.1186/1472-6939-9-9

Abstract

Background. In emergency research, obtaining informed consent can be problematic. Research to develop and improve treatments for patients admitted to hospital with life-threatening and debilitating conditions is much needed yet the issue of research without consent (RWC) raises concerns about unethical practices and the loss of individual autonomy. Consistent with the policy and practice turn towards greater patient and public involvement in health care decisions, in the US, Canada and EU, guidelines and legislation implemented to protect patients and facilitate acute research with adults who are unable to give consent have been developed with little involvement of the lay public. This paper reviews research examining public opinion regarding RWC for research in emergency situations, and whether the rules and regulations permitting research of this kind are in accordance with the views of those who ultimately may be the most affected. Methods. Seven electronic databases were searched: Medline, Embase, CINAHL, Cochrane Database of Systematic Reviews, Philosopher's Index, Age Info, PsychInfo, Sociological Abstracts and Web of Science. Only those articles pertaining to the views of the public in the US, Canada and EU member states were included. Opinion pieces and those not published in English were excluded. Results. Considering the wealth of literature on the perspectives of professionals, there was relatively little information about public attitudes. Twelve studies employing a range of research methods were identified. In five of the six questionnaire surveys around half the sample did not agree generally with RWC, though paradoxically, a higher percentage would personally take part in such a study. Unfortunately most of the studies were not designed to investigate individuals' views in any depth. There also appears to be a level of mistrust of medical research and some patients were more likely to accept an experimental treatment 'outside' of a research protocol. Conclusion. There are too few data to evaluate whether the rules and regulations permitting RWC protects - or is acceptable to - the public. However, any attempts to engage the public should take place in the context of findings from further basic research to attend to the apparently paradoxical findings of some of the current surveys.

Item Type: Article
Uncontrolled Keywords: Community Consultation, Focus Group Study, Emergency Department Patient, Public Involvement, Public Attitude
Subjects: A300 Clinical Medicine
A900 Others in Medicine and Dentistry
B800 Medical Technology
B900 Others in Subjects allied to Medicine
C100 Biology
Department: Faculties > Health and Life Sciences > Social Work, Education and Community Wellbeing
Depositing User: Rachel Branson
Date Deposited: 18 May 2021 15:27
Last Modified: 31 May 2021 14:37
URI: http://nrl.northumbria.ac.uk/id/eprint/46208

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