Infants, the dead donor rule, and anencephalic organ donation: should the rules be changed?

When parents learn that their baby will be anencephalic, tragic choices must be made concerning how aggressively the infant should be treated. The parents' acceptance of the seriousness of the condition is often accompanied by their desire to donate the child's organs as a way of making an anencephalic's brief existence seem meaningful. Current U.S. law precludes parents from choosing organ donation, however, unless the child meets the "whole brain death" definition. Critics of restrictive organ donation policies founded on the whole brain death definition have responded in two ways. Some have proposed revisions that would broaden this definition of death. Others have appealed to interpretations that allow organ procurement from non-heart-beating donors and argue that this interpretation should be applied to anencephalics. We will consider both responses to policies restricting anencephalic organ donation by addressing international legal perspectives on whether a "duty to rescue" exists in this context and whether the need for increased organ donation is so urgent that it is justified to adopt less stringent guidelines overall. Finally, we will focus on the issue of the limits of parental decision making on behalf of anencephalics.