Organ Donation Law

As many as half of the approximately 1,500 children waiting for organ transplants each year die before donors can be found. The shortage of donors has led to calls for permitting the organs of children born with the birth defect anencephaly to be donated before the children die. The issue has proved controversial, as doctors and medical ethicists debate the legality and morality of allowing the harvesting of organs from a person who is not legally dead.

Anencephaly is a birth defect that prevents the skull and brain from fully developing. While the heart and other internal organs of anencephalic INFANTS often develop normally, most of the brain is missing. The anencephalic infant possesses a brain stem, which can keep breathing and heartbeat going temporarily. But because the cerebral cortex is missing, the infant has no thought or sensory functions and will never be conscious. Most of these infants die within hours or days of birth. Because of these bleak prospects, most of each year's 2,500 anencephalic pregnancies are aborted.

Some parents have forgone ABORTION but have sought to have their child's organs donated. Because the brain stem gradually fails after birth, an infant's heartbeat and breathing gradually slow until the infant dies of heart failure or stops breathing. The vital organs deteriorate, however, leaving them useless as transplants. The only way the organs can be used is if they are removed while the infant is still alive. This requirement cannot be met under current law because organ donation is premised on the dead donor rule: donors must be declared brain dead before their organs can be removed. An anencephalic infant exists in a gray area between life and death, but because the brain stem functions, he cannot be declared brain dead. Therefore, the harvesting of organs of anencephalic infants would require stretching the definition of death.

Some physicians, medical ethicists, and parents of anencephalic infants believe that such a redefinition should occur and that organ retrieval from an anencephalic infant at birth should be permitted. They argue that an anencephalic infant's profound abnormality makes it permissible to make an exception to the dead donor rule. It is a unique abnormality: the infant never experiences consciousness.

Proponents contend that, because these infants are never conscious, they do not meet the most minimal criteria for becoming a person. In 1995 the American Medical Association's (AMA) Council on Ethical and Judicial Affairs supported the idea of organ retrieval from anencephalic infants at birth on the basis that the infants' lack of consciousness meant that they could not suffer harm.

Proponents point out that it has been the parents of anencephalic infants who have sought to donate the babies' organs. As long as the harvesting of organs is done at the request of the parents and with their consent, the interests of the parents are not harmed. For these parents the desire to have some good come from the tragedy of giving birth to an anencephalic infant is the driving force in making their decision.

Finally, proponents note the shortage of organs for transplantation in children. Because of this shortage, many children die who might otherwise live a normal life if given a transplant. Some experts believe that using organs from anencephalic infants could mean up to an additional three hundred transplants a year. Faced with this prospect, proponents contend that society's interests are advanced by making a narrow exception to the dead donor rule.

Opponents are horrified at the idea of removing organs from a living infant. They contend that the dead donor rule is an important boundary in medical science. Crossing this line in the case of anencephalic infants, they contend, will cause a "slippery slope" effect. Physicians might ask to harvest organs from coma victims or from children with other severe, but nonfatal brain defects. Opponents argue that blurring the definition of brain death will have detrimental consequences to society greater than the benefit of obtaining organs from several hundred infants each year.

Critics further argue that anencephalic infants are human beings who deserve the protection of the law. They point out that, to be an organ donor, a person's entire brain must be declared dead. This means that the brain stem completely ceases to function and to produce electrical impulses and that the person has no reflexes or responses. Anencephalic infants do not meet all these criteria. They are not brain dead because the brain stem functions, they support their respiration independently, and they have responses and reflexes. These critics note that, only six months after its support of harvesting organs from anencephalic infants at birth, the AMA's Council on Ethical and Judicial Affairs reversed its decision, citing questions as to whether anencephalic infants are truly unconscious and whether they feel pain.

Though most of the critics ground their objections in ethical, moral, and religious concerns about the sanctity of human life, others have more pragmatic arguments. These critics argue that the debate itself over harvesting organs from anencephalic infants at birth harms the effort to recruit the general public as organ donors. The public may become fearful that the medical community is seeking ways to change the definition of death. The few hundred organs a year that could be gained through a change in law, these critics contend, is not worth the loss of thousands of potential donors.

Critics respect the desire of parents who wish to do something good through organ donation. Yet they contend that making parents feel better does not rank higher than society's interest in preserving human life. Unless a state passes a law that makes an exception to the dead donor rule, the use of anencephalic infants as organ sources immediately upon birth will not occur.