PEDIATRIC BONE MARROW TRANSPLANTATION-A BIO-ETHICAL MODEL

Informed consent for children is traditionally obtained by agreement between physicians and parents acting for themselves and their child. In marrow transplantation, donors undergo a hazardous procedure of no physical benefit. Parental ability to consent for donor or critically ill recipient is compromised. A system was devised to represent the interests of parents, donor and recipient in this setting. This included peer review, a court appointed donor guardian, psychiatric consultation, full age-appropriate explanations to all parties and judicial review. Despite fears about over-publicity and over-informed participants, outside observers agreed that maximum information transfer occurred which allowed easier hospitalization. Three cases of severe unresponsive aplastic anemia are presented in which selection of decision-makers, use of veto power, and the concept of consensus were involved. In 1 consent for transplantation was unanimous. The patient recovered. Parents refused permission in the second case. The patient died. In a third case consent was felt to be unobtainable from a brain damaged donor. A court permitted this donation. Assessing the competence of a minor to protect his interests and to give consent should be a critical objective of developmental pediatrics. Bone marrow transplantation in aplastic anemia can be regarded as a model for the study and development of approaches to ethical decisions in the application of advanced lifesaving technologies.