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Ethical issues of clinical trials in paediatric oncology from 2003 to 2013: a systematic review

Dupont, J-CK; Pritchard-Jones, K; Doz, F; (2016) Ethical issues of clinical trials in paediatric oncology from 2003 to 2013: a systematic review. Lancet Oncology , 17 (5) e187-e197. 10.1016/S1470-2045(16)00142-X. Green open access

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Abstract

A state-of-the art approach to the debates on ethical issues is key in order to gain guidance on research practices involving sick children and adolescents, as well as to identify research avenues in which it might be worth cooperating, to generate better or supplementary evidence. Based on a systematic literature search using MEDLINE, we report the main ethical developments in paediatric oncology clinical trials from 2003–13. The present knowledge about normative and empirical ethical demands in this setting is quantified and summarised in a list of 46 issues. This list primarily aims to provide readers with a comprehensive account of the main decision nodes and professional attitudes that enable families to make a safe, competent, and satisfactory decision about their child's enrolment, or non-participation, in cancer clinical trials. Our systematic Review shows how important it is for professionals to engage in a constant reflection on optimum trial designs, on the effect of offering trial participation on key family dynamics, and on the ways to understand families' needs and values accurately. In view of present scientific developments, we further emphasise the need to enhance societal awareness about research in children and adolescents, to prevent so-called research fatigue in small populations due to multiple solicitations or inadequate legal demands, and to reassess longstanding ethical certainties in the strictest view of promoting sick children's interests. This systematic Review allows a series of questions to be drawn to guide and encourage collective and individual endeavours that should lead to constant improvements in our research practices in paediatric clinical oncology research.

Type: Article
Title: Ethical issues of clinical trials in paediatric oncology from 2003 to 2013: a systematic review
Open access status: An open access version is available from UCL Discovery
DOI: 10.1016/S1470-2045(16)00142-X
Publisher version: http://dx.doi.org/10.1016/S1470-2045(16)00142-X
Language: English
Additional information: Copyright © 2016 Elsevier Ltd. All rights reserved. This manuscript version is made available under the CC-BY-NC-ND 4.0 license http://creativecommons.org/licenses/by-nc-nd/4.0/
Keywords: Science & Technology, Life Sciences & Biomedicine, Oncology, Informed-consent Process, Cancer-research, Research Participants, Childhood-cancer, Decision-making, European Collaboration, Drug Development, Medical-research, Children, Parents
UCL classification: UCL
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > UCL GOS Institute of Child Health
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > UCL GOS Institute of Child Health > Developmental Biology and Cancer Dept
URI: https://discovery.ucl.ac.uk/id/eprint/1529151
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