Towards beneficence for young children in research : challenges for bioethics committees

Bioethics committees are the focus of international scrutiny,particularly in relation to their application of the principle of beneficence,ensuring that risks incurred in research are outweighed by benefits to those involved directly and to the broader society. Beneficence, in turn, has become an international focus in research with young children, who hitherto had been rarely seen or heard in their own right in research.Twenty years ago, The United Nations Convention on the Rights of the Child 1989 raised global awareness of children’s human rights to both participation and protection, and articulation of children’s rights came to inform understandings of young children’s rights in research. In the intervening period, countries such as Australia came to favour child protection and risk minimisation in research over the notion of children’s bone fide participation in research. A key element of the protection regime was the theoretical understanding of young children as developmentally unable and, therefore, unfit to understand, consent to and fully participate as research participants. This understanding has been challenged in recent decades by new theoretical understandings of children’s competence, where children can be seen to demonstrate competence, even at an early age, in consenting to, participating in and withdrawing from research. The paper draws on these understandings to provide insights for human research gatekeepers, such as bioethics committees, to deal with the challenges of research with young children and to realize the benefits that may accrue to children in research.