Anencephaly: where do we now stand?

Abstract

In 1995 the American Medical Association's ethics council issued an opinion calling for the direct procurement of organs from anencephalic newborns, making them an exception to the "dead donor" rule. Such a firestorm erupted that the Council for Ethical and Judicial Affairs withdrew its opinion. Although the AMA has called for further research into possible "consciousness" in anencephalic newborns, present studies convincingly demonstrate that the brain stems of these infants are almost completely devoid of any evidence of even primitive functional organization. New studies indicate that cerebral absence causes unusual behaviors such as stiffening and hyperirritability that can be detected prenatally. Although widespread testing and screening in recent years has drastically reduced the number of anencephalic newborns, the discussion of use continues, raising ethical issues that pertain to other marginal patients such as those in persistent vegetative states. There are two schools of thought on the permissibility of using anencephalic newborns as organ sources: physicalism and personalism. Physicalism holds that all humans are so precious that no exceptions can be made regarding organ procurement, even in the case of anencephaly. Personalism sees moral worth related to one's potential or actual mental capacities, and because of anencephalic newborns' uniqueness, believes considerable liberties can be taken here. Most bioethicists are themselves in the personalist camp, but many have questions about changing the law to allow for a proposal such as the AMA Council's, because of the social impact of that change.