RT Article
T1 Voluntary Informed Consent in Paediatric Oncology Research
JF Bioethics
VO 30
IS 6
SP 440
OP 450
A1 Dekking, Sara A. S.
A1 Delden, Johannes J. M. van
A1 Graaf, Rieke Van Der
LA English
PB Wiley-Blackwell
YR 2016
UL https://ixtheo.de/Record/1727682947
AB In paediatric oncology, research and treatments are often closely combined, which may compromise voluntary informed consent of parents. We identified two key scenarios in which voluntary informed consent for paediatric oncology studies is potentially compromised due to the intertwinement of research and care. The first scenario is inclusion by the treating paediatric oncologist, the second scenario concerns treatments confined to the research context. In this article we examine whether voluntary informed consent of parents for research is compromised in these two scenarios, and if so whether this is also morally problematic. For this, we employ the account of voluntary consent from Nelson and colleagues, who assert that voluntary consent requires substantial freedom from controlling influences. We argue that, in the absence of persuasion or manipulation, inclusion by the treating physician does not compromise voluntariness. However, it may function as a risk factor for controlling influence as it narrows the scope within which parents make decisions. Furthermore, physician appeal to reciprocity is not controlling as it constitutes persuasion. In addition, framing information is a form of informational manipulation and constitutes a controlling influence. In the second scenario, treatments confined to the research context qualify as controlling if the available options are restricted through manipulation of options. Although none of the influences is morally problematic in itself, a combination of influences may create morally problematic instances of involuntary informed consent. Therefore, safeguards should be implemented to establish an optimal environment for parents to provide voluntary informed consent in an integrated research-care context.
K1 children with cancer
K1 Informed Consent
K1 paediatric oncology
K1 research ethics
K1 voluntariness
DO 10.1111/bioe.12237