Non-beneficial paediatric research is vital to improving paediatric healthcare. Nevertheless, it is also ethically controversial. By definition, subjects of such studies are unable to give consent and they are exposed to risks only for the benefit of others, without obtaining any clinical benefits which could compensate those risks. This raises ethical concern that children participating in non-beneficial research are treated instrumentally; that they are reduced to mere instruments for the benefit of science and society. But this would make the research (...) incompatible with the widely endorsed principle of the primacy of the human subject, which stipulates that the interests of the participating individual should prevail over the interests of science and society. This paper deals with this conflict. It analyses solutions to this problem developed in the literature, and shows that they are unsuccessful. Finally, it offers a new idea of how to reconcile the conduct of non-beneficial paediatric research with the PP. The paper argues for a new formula of the PP, and shows that it implies a specific non-comparative definition of the minimal risk threshold. (shrink)

The inclusion of children in research gives rise to a difficult ethical question: What justifies children's research participation and exposure to research risks when they cannot provide informed consent? This question arises out of the tension between the moral requirement to obtain a subject's informed consent for research participation, on the one hand, and the limited capacity of most children to provide informed consent, on the other. Most agree that children's participation in clinical research can be justified. But the ethical (...) justification for exposing children to research risks in the absence of consent remains unclear. One prevalent group of arguments aims to justify children's risk exposure by appealing to the concept of benefit. I call these ‘benefit arguments’. Prominent versions of this argument defend the idea that broadening our understanding of the notion of benefit to include non-medical benefits helps to justify children's research participation. I argue that existing benefit arguments are not persuasive and raise problems with the strategy of appealing to broader notions of benefit to justify children's exposure to research risk. (shrink)

Non-therapeutic research on children raises ethical concerns. Such research is not only conducted on individuals who are incapable of providing informed consent. It also typically involves some degree of risk or discomfort, without prospects of medically benefiting the participating children. Therefore, these children seem to be instrumentalized. Some ethicists, however, have tried to sidestep this problem by arguing that the children may indirectly benefit from participating in such research, in ways not related to the medical intervention as such. It has (...) been argued, for example, that non-therapeutic pediatric research does not instrumentalize the children enrolled since it has the prospects of furthering their moral development. We argue that this argument is far too undeveloped to be taken seriously. (shrink)

Inclusion of children in medical decision making, to the extent of their ability and interest in doing so, should be the default position, ensuring that children are routinely given a voice. However, optimizing the involvement of children in their health care decisions remains challenging for clinicians. Missing from the literature is a stepwise approach to assessing when and how a child should be included in medical decision making. We propose a systematic approach for doing so, and we apply this approach (...) in a discussion of two challenging clinical cases. The approach is informed by a literature review, and is anchored by case studies of teenagers' refusal of clinical care, regulatory requirements for research assent, and the accepted approach to involving cognitively impaired adults in medical decisions. (shrink)

Ethical issues about children’s rights in respect of matters concerning resource allocation or treatment opportunities are now a matter for public consumption and concern. Alongside this exists a long-frustrated desire by children’s nurses to promote children’s health. Long-held assumptions about the legal and moral status of children within the health care system in this country are now rightly scrutinized and challenged. Those of us who claim to represent children now possess an opportunity to exploit public attention for the benefit of (...) these children. This article will explore selected major relevant legal and moral concepts that relate to children with the aim of making transparent some of the important and often confusing information available. It is anticipated that debates about the legal and ethical status of children may be stimulated and fuelled from the following discussion. It is strongly recommended that entering into dialogue with families and children about their perceived needs will go a long way towards advancing thoughtful nursing care of individual children, their families and the general population. (shrink)

Within this thesis, I argue for an interpretive approach to bioethics in pediatric intensive care. I begin by outlining the dominant bioethical doctrine that defines standards for ethical care in critically ill children. I critique this doctrine as legalistic and acultural. Drawing largely on the ideas of Charles Taylor, I call for a reconception of bioethics and propose an interpretive framework that is centred on culture and context. Finally, I illustrate this interpretive approach through a comparative study of two cases (...) in pediatric intensive care: the narratives of Marc and Larry. (shrink)