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A Familiarization Protocol Facilitates the Participation of Children with ASD in Electrophysiological Research
Published on: July 31, 2017
Licensing competent children to assist institutional review boards
Samuel Asiedu Owusu1, Claudia Passos-Ferreira2
1Directorate of Research, Innovation and Consultancy, University of Cape Coast, Cape Coast, Ghana sowusu@ucc.edu.gh.
None:
Adults are not always capable of representing children's views and interests, and many ethical issues in paediatric research could be better approached if children's perspectives are taken into consideration. Children do not currently serve as institutional review board (IRB) members or provide support to IRBs who review and decide on paediatric research proposals. Based on research on moral development, however, many children are competent and could play expert roles in the IRB process with significant benefits to the latter. In this article, we argue that competent children should be permitted to assist members of IRBs in reviewing proposed paediatric research. We present three reasons in favour of involving children in IRB activities: (1) this allows children to be more adequately represented; (2) this yields a more sensitive approach to ethical complexities in paediatric research; and (3) this can improve the quality of paediatric research and enhance the well-being of research subjects. We offer a model of how competent children could play a role in the IRB process and we discuss the application of this model in the context of global paediatric research in Ghana. We address some worries about involving children in IRBs, focusing on different stakeholders involved in the research review process: the impact on children, IRB members and paediatric researchers.
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