AMA rethinks taking organs from anencephalic infants Possibility of awareness prompts reversal of policy


Eighteen months after declaring it ethically acceptable to take organs for transplant from infants who were born with only a small part of the brain but are not brain dead, the American Medical Association has changed its policy.

Last month, largely in response to criticism from its own ranks, the AMA "temporarily suspended" its approval of harvesting organs from such babies, whose condition, anencephaly, causes them to be born with only a brain stem, the part of the brain that controls heartbeat and breathing but not higher functions.

Such newborns rarely survive more than a few days or weeks.

In changing its policy, the AMA reinstated an earlier one, favoring prohibition of the use of such babies as organ donors until they meet the legal criterion for brain death: the complete cessation of brain function.

The change is expected to remain in effect for several years, at the very least, to give researchers time to learn more about brain function in anencephalic infants. The researchers want to determine whether these babies have the potential to experience any degree of consciousness.

In June 1994, the association's council on judicial and ethical affairs issued its opinion that anencephalic newborns could be organ donors, provided the donation was initiated by their parents and not solicited by doctors or other medical personnel.

That policy reflected concern about the widely recognized shortage of donor organs, particularly for infants, said Dr. Charles Plows, chairman of the council.

And, he said, members were influenced by a case in which parents wanted to donate their anencephalic infant's organs but were denied permission by the courts.

Although organ donation in such cases, as in any others, was already allowed once brain death occurred, by that time the organs have usually deteriorated too much to be used, Dr. Plows said.

The 1994 opinion never led to the harvesting of any organs before brain death. But, virtually from the moment it was issued, the policy came under fire from doctors and medical ethicists.

A leading opponent was the American Academy of Neurology, (( which asked the AMA to reconsider its position.

A strong objection came from Dr. Michael Williams, a neurologist the Johns Hopkins University, who maintains that although anencephalics have "zero potential for normal development," it has not been proved that they will never achieve consciousness.

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