What Do We Owe Future Adults? Evaluating the Implications of the Right to an Open Future for Non-Therapeutic Pediatric Research

Abstract: The child’s right to an open future (ROF) is a normative ideal that emphasizes preserving choices until children have reached maturity and can decide for themselves as autonomous adults. While it has been applied to dozens of issues in pediatric bioethics, ROF has not been widely discussed in relation to pediatric research and, specifically, non-therapeutic research involving children. This lacuna is significant as the essential logic of ROF would, on its face, seem to exclude children from participating in any research lacking the prospect of direct benefit. Indeed, bioethics’ most famous critic of non-therapeutic pediatric research, Paul Ramsey, anticipated ROF in declaring that, “No child…can choose to become a participating member of medical undertakings,…[but] when he is grown, the child may put away childish things and become a true volunteer.”

In this presentation, I will bring two hitherto distinct bioethical discourses into dialogue with one another. The first concerns the philosophical foundations of pediatric research ethics as exemplified in the legendary debates between Ramsey and Richard McCormick, while the second explores how bioethicists should understand and protect the developing autonomy of children as highlighted in debates between proponents and critics of ROF. I will argue that these debates share important parallels and can inform and even transform one another. Ultimately, I conclude by identifying promising tools emerging from both debates that can provide new conceptual and practical foundations upon which to defend the permissibility of non-therapeutic pediatric research.