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)

Modern biobanks typically rely on the public to freely donate genetic data, undergo physical measurements and tests, allow access to medical records and give other personal information by questionnaire or interview. Given the demands on participants it is not surprising that there has been extensive public consultation even before biobanks in the UK and elsewhere began to recruit. This paper considers the different ways in which biobanks have attempted to engage and appeal to their publics and the reaction of potential (...) and actual donors. Whilst those organising biobanks presumably want to be as close to their publics as they need to be in order to successfully recruit and sustain participation in sufficient numbers, the closer the relationship the more obligations and expectations there are on both sides. (shrink)

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. (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)

The methodology of the IDEFICS (Identification and prevention of dietary- and lifestyle-induced health effects in children and infants) study raises a number of important ethical questions. Many of these are already well recognised in ethical guidelines that uphold principles of individual and parental consent, confidentiality and scientific review. There are, however, wider issues that require ethical reflection. In this paper, we focus on a set of problems surrounding the evaluation of complex social interventions, and argue that comprehensive and objective evaluation (...) is a much more ethically charged aim than it may first appear. In particular, we contend that standard scientific measures - of body size and biomarkers - convey only part of the story. This is partly because, when we intervene in communities, we are also concerned with complex social effects. These effects are made even more complex by contemporary social anxieties about fat and physical appearance, as well as about the safety and security of children. Such anxieties increase the risk of undesirable side effects that are themselves difficult to gauge. In the face of these and other complexities, we argue that the evaluation of interventions should involve a strong ethical dimension. First, it must include - as does the IDEFICS study - consideration of the opinions of the people affected, who are subjected to interventions in ways that necessarily go beyond individual consent. Second, we suggest that interventions might also be assessed by how much they empower people - and especially those persons, such as children, who are otherwise often disempowered. (shrink)