A Canadian Perspective on a Child’s Consent to Research within a Context of Family-Centered Care: From Incompatibility to Synergy

Two major trends have developed in pediatric bioethics: family-centered care and increased recognition of emerging autonomy through legal and policy entrenched rights. The different foci of their corresponding health care delivery models (“family-centered” or “patient-/child-centered”) create the potential for conflict in the context of seeking consent to research or, as will be presented, the possibility of integration. Given the state of current bioethical principles and legal holdings, the pediatric patient should ultimately be the primary focus of ethical consideration and, at least in the context of dissenting to research, the child’s autonomous wishes should reign. However, in recognizing and supporting a child’s emerging autonomy, the family context should also be respected and taken into account. This discussion articulates the values underpinning these two important trends in pediatric health care delivery, and proposes a model for obtaining consent for pediatric research in the current context.