Garrath Williams

This paper considers the often-expressed fear that medical research may use children merely as means, and not respect them as ends in themselves – especially insofar as they are deemed less able to consent than adults. The main focus is on large-scale genetic, socio-medical and epidemiological research. The theoretical starting point of the paper is that to be treated as an end in oneself is to be regarded as – and to act as – a participant in cooperative endeavours. This participatory status is certainly connected with individual authority to consent and dissent; and there is no doubt that consent plays an important role when adults participate in many research projects. However, insofar as consent is located within structures of human cooperation, the authority to consent is not a straightforward privilege. Rather, consent is bound up with responsibility for one's choices and commitment to shared terms of cooperation. Given this understanding, it is argued that consent should not be our principal concern when we involve children in research. This is not because of children's (possible) incompetence to consent as such, but rather because children are still learning how to respect and assess the cooperative terms involved in our institutional lives. Instead, our leading concern should be with the terms regulating their involvement in research. Given suitable safeguards, research is one way in which children may learn what it is to bear responsibilities and to act as an end in oneself – that is, to cooperate with others on reasonable terms and for worthy ends

In this first part of the article, I want to sketch two things. First, I will say something about the idea of free will. The paradoxes involved in this idea often occur to people even before they come to philosophy, and these difficulties will be central to Kant’s account. But second, before turning to Kant, I would like to tackle Aristotle’s broad approach, and show that, before free will was invented by Christian philosophers, there was a quite different way of thinking about moral responsibility – one that has much to teach us. In the second part of the article, to appear in the next issue, I ask why Kant’s account continues to attract many people who would not dream of calling themselves Kantians – indeed, many who have never even heard Kant’s name. Kant’s theory involves a powerful idea of moral worth based on choice. This idea, though problematic because of the idea of freedom it seems to depend on, does account for many of our intuitions about moral responsibility. But it is not the only explanation of these intuitions, nor – I will argue – is it the most plausible.

Ethical issues surrounding research are complex and multifaceted. There are issues concerning: the methods used, the intended purpose, the foreseen and unforeseen effects, the use and dissemination of findings, and, not least, what is and what fails to be researched. - In this article we break down the issues into two main categories: (I) how the research itself is done; and (II) how it is determined by and in turn affects a wider context. In the first section we discuss familiar issues such as the need for methodologically sound investigation, appropriate protections for the human subjects of research, as well as issues arising in collaborative research. The second set of issues is less well investigated and, indeed, particularly difficult to address; these are issues that extend well beyond the control of the researcher(s) or, quite often, any one individual or organization. We discuss the selection of research topics, research funding, publication and, finally, the role of external ethical guidelines and their institutional setting.