Infants with Anencephaly as Organ Sources: Ethical Considerations

Pediatric organ transplantation offers an increasing number of seriously ill children the opportunity for a healthy life. However, there is currently a severe shortage of pediatric organs. Young children rarely die in circumstances that would make them medically acceptable sources of organs. Among the children younger than 2 years of age registered to receive transplants, an estimated 30% to 50% die before an organ becomes available.’ In April 1990, the United Network for Organ Sharing reported 320 children younger than 5 years of age waiting for kidney (99), liver (178), heart (34), or heart-lung (9) transplants. Although improved organization of the organ procurement system could partially ameliorate the problem, in all likelihood, pediatric organs will remain a scarce medical resource.2 Anencephaly is a congenital defect in which the cranium is absent and the cerebral cortex is virtually absent. However, vital organs, such as the heart and kidneys, are often normal. About 1000 to 2000 live anencephalic births occur annually in this country. Brain stem function enables many anencephalic infants to survive for hours or days and, in rare cases, for a few weeks.3 In recent years, some parents of anencephalic infants, as well as some transplant surgeons, medical ethicists, and state legislators, have proposed that these infants’ organs be used for transplantation.4’5 Some parents have poignantly expressed their wish that some good might come of their loss. In their opinion, there is no compelling reason for failing to use an anencephalic infant’s organs to give life and health to other children. Numerous medical, ethical, and legal questions are raised by the proposals to use anencephalic infants as organ sources. In this statement, we summarize and analyze these proposals. We conclude that there currently is no convincing basis for deviating from the existing legal rules governing organ transplantation. Moreover, in light of the present lack of data on this subject, any attempt to use these infants’ organs should be classified as experimental and constrained by the usual ethical and regulatory principles applicable to research using human subjects.