Taking a stand on one of medicine’s most contentious ethical issues, an expert committee of the American Medical Association says it should be permissible to take organs from anencephalic babies while they are alive.
Babies with anencephaly are born with a brain stem, which allows them to breathe and their hearts to beat, but are missing the rest of the brain.
They never gain consciousness and most live no more than a few days. But for a time they do not fit the legal definition of death, the total halting of brain function.
In recent years, courts have said that anencephalic babies fall under the purview of the Americans With Disabilities Act, deserving all the medical care that society can provide.
On the other hand, some doctors and ethicists have advocated changing the definition of death so that these infants could be termed dead and their organs donated.
About 1,000 anencephalic babies are born in the United States each year, and there is a shortage of hearts, livers and kidneys for transplantation in children.
Organs may now be donated by anencephalic babies after death, but at that point the organs have deteriorated and cannot be used.
Last June the association’s Council on Ethical and Judicial Affairs concluded that if the baby’s parents asked to donate their infant’s organs, it was ethically acceptable for doctors to take them even though the babies were still technically alive.
And, in a report being published today in The Journal of the American Medical Association, the council explained its decision. These babies, the report noted, “never have thoughts, feelings, sensations, desires or emotions.”
The committee concluded that it is ethically permissible to consider the anencephalic neonate as a potential organ donor, although still alive under the current definition of death.
The diagnosis of anencephaly would have to be confirmed by two experts not associated with the transplant team, and any discussion of organ removal would have to originate with the neonate’s parents.
Predictably, the report raised the ire of some ethicists.
George Annas, an ethicist and health lawyer at Boston College, said the council was advancing “a horrific and horrendous idea.”
Anencephalic babies “are children,” he said. “These are real live human beings. They are extraordinarily handicapped, but they are live human beings.”
To even suggest that they could be organ donors, Annas added, is to blur the line between life and death and to raise the specter of taking organs from people while they are still alive.
The 13-member council, headed by Dr. John Glasson of Durham, N.C., a retired professor at Duke University, said in its report that even with the change in its position, the law would have to be modified before such donations could be carried out.
The report noted that because of a scarcity of organs, 30 percent to 50 percent of children younger than age 2 who are waiting for transplants die before an organ becomes available.