Organs from Anencephalic Infants: An Idea Whose Time Has Not Yet Come

Organs from Anencephalic Infants: An Idea Whose Time Has Not Yet Come Removing organs from infants with anencephaly for the purpose of transplantation seems to be such an eminently desirable activity that for many the controversy over it is puzzling. Potentially hundreds of lives of terminally ill children could be saved with hearts, lives, or kidneys. [1] Much of the pressure for such organ donation in fact comes from parents of anencephalic infants, who typically see such transplantations as in their interests. Removal of organs would not seem to violate any interests of the anencephalic infant, whose imminent death is certain and who presumably is incapable of experiencing pain or discomfort. And expanding the availability of organs in this way has long been advocated by physicians at the forefront of organ transplantation. Who would be opposed to a program that seems to benefit so many and harm no one? Yet controversy persists on a variety of unresolved empirical, legal, and philosophical questions. [2] Two preliminary observations about language should be made. First, "donation," meaning "gift," suggests a voluntary, freely chosen act. [3] Since infants are incapable of donation in this sense, it is more appropriate to refer to them as sources rather than donors, and to the taking of their organs for transplantation as removal or procurement rather than donation. Yet however deformed and handicapped anencephalic infants may be, they are persons under the law and should be treated as such, at least until the present debate is resolved. It is depersonalizing to refer to them by terms such as "anencephalics," or still worse "sources." At the cost of a few extra words, it is preferable to refer to such infants as "infants from whom organs might be taken," or to keep the word "donor" in quotation marks. What is the Problem? The central doctrine for most of the history of organ transplantation has been the "dead donor" rule: Nonconsenting patients must be dead before removal of their organs. But anencephalic infants do not generally meet current standards of death. They are typically born with some or all of their brainstem functions intact. The usual mode of death is presumably cardiorespiratory failure under circumstances that make their organs unsuitable for transplantation. Nor do infants with anencephaly meet the traditional criterial used to justify organ donation from living persons, whether competent adults, minors, or mentally retarded persons. [4] They are incapable of consenting, and they have no present or future interest that is served by saving the life of the recipient, related or not. Thus, proposals to remove the organs of anencephalic infants in ways that would be ethically and legally acceptable require either changing the present rules--discovering a justification for removing organs that requires neither consent, death, or benefit to the person from whom the organs are removed--or devising a way of removing their organs that does not violate the present rules. the positions most frequently advocated--waiting for traditional (cardiorespiratory) death to occur, maintaining cardiorespiratory support until brain death occurs, redefining brain death as cortical death to allow anencephalic infants to be pronounced dead immediately, or redefining anencephaly as a special category altogether--suffer from various medical, ethical, or conceptual problems. Abandoning the "dead donor" rule itself would seem to be a more viable alternative. But ultimately, reasons justify actions, and until there is consensus on what reasons suffice for this procedure, as well as clarification of some unanswered medical questions, a moratorium should be imposed on organ removal from these infants. Waiting for Traditional Death Most anencephalic infants die within a few days of birth, though survivors of weeks, months, and even years have been reported or claimed. …