Decision-making about child participation in medical research : a relational approach

This paper explores the literature on understanding and interpreting parents’ motivations for the participation of their child in medical research. The paper analyses how and to what extent ethics of care theory can enhance how we both understand and interpret parents’ motivations for research participation. Analysis is focused on the level of attention that needs to be given to a child in the context of his or her caring relationships and the responsibilities that arise within these relationships. This paper seeks to illustrate how it is necessary to move away from an individualistic approach to decision-making to one that refocuses our attention on the web of relationships within which a child is usually placed. Sufficient acknowledgement and appropriate treatment of the complex interests and responsibility in caring relationships is crucial to determining the suitability of decision-making about child participation in medical research. If care ethics provides an improved understanding and interpretation of parents’ motivations for research participation, then it is necessary to consider the extent to which this improved understanding and interpretation of parents’ motivations based on care theory can usefully inform principles that underpin existing ethical and legal frameworks for decision-making.