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Body matters: rethinking the ethical acceptability of non-beneficial clinical research with children

Type of publication Peer-reviewed
Publikationsform Original article (peer-reviewed)
Author De Clercq Eva, Badarau Domnita Oana, Ruhe Katharina M., Wangmo Tenzin,
Project Attitudes and motives concerning end-of-life decisions: competency and autonomy of children and adolescents in paediatric oncology
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Original article (peer-reviewed)

Journal Medicine, Health Care and Philosophy
Volume (Issue) 18(3)
Page(s) 421 - 431
Title of proceedings Medicine, Health Care and Philosophy
DOI 10.1007/s11019-014-9616-3


© 2014, Springer Science+Business Media Dordrecht. The involvement of children in non-beneficial clinical research is extremely important for improving pediatric care, but its ethical acceptability is still disputed. Therefore, various pro-research justifications have been proposed throughout the years. The present essay aims at contributing to the on-going discussion surrounding children’s participation in non-beneficial clinical research. Building on Wendler’s ‘contribution to a valuable project’ justification, but going beyond a risk/benefit analysis, it articulates a pro-research argument which appeals to a phenomenological view on the body and vulnerability. It is claimed that children’s bodies are not mere physical objects, but body-subjects due to which children, as persons, can contribute to research that may hold no direct clinical benefit to them even before they can give informed consent.