Garrath Williams

Like most bioethical discussion, examination of human biobanks has been largely framed in terms of research subjects’ rights, principally informed consent, with some gestures toward public benefits. However, informed consent is for the competent, rights-bearing individual: focussing on the individual, it thus neglects social, economic and even political matters; focussing on the competent rights-bearer, it does not serve situations where consent is plainly inappropriate (eg, the young child) or where coercion can obviously be justified (the criminal). Using the British experience of large-scale biobanking, I argue that the focus on consenting individuals distorts our ways of thinking about biobanks and has serious practical ramifications. This becomes clear if we contrast the case of adult biobanks intended for medical research with two other forms of biobanking. Thus child cohort studies – vital for sound scientific investigation of the interplay of genetics and environment in health – have been very badly funded next to adult studies. On the other hand, forensic databases have attracted massive investment, but little debate – partly owing to a sense that here, at least, is a case where consent is not relevant. Contrasting these central types of biobanking, I will suggest that there are powerful factors at work in limiting ‘ethics’ to individual rights. Projects of this size should direct our attention to more overtly political questions concerning priority setting and organisation of medical research.

Discusses what is involved in describing a person as responsible: she has responsibilities that she is duty-bound to undertake, and may be held responsible when she fails to fulfill these. Considers why societies and organizations divide responsibilities between persons. Also considers how questions of responsibility arise in the spheres of morality, law, organizational life and politics, and how different modes of holding responsible may be appropriate in each. Concludes with a brief discussion of some questions about collective responsibility.

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.