Is It Ethical to Use Anencephalic Newborns for Organ Donation?

Arthur L. Caplan, PhD


March 10, 2017

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Hi. I am Art Caplan at New York University's Langone Medical Center, Division of Medical Ethics.

There have been a lot of headlines lately about a very brave mom who is carrying a child with a terrible birth defect. The defect is called anencephaly. It means that the top of the skull and the brain, the major part of the cortex where thought and sentience reside, did not develop. The condition is uniformly fatal, although how long a baby can live after birth with it is not clear.

Most women, when they find out that they have a fetus with this diagnosis, end the pregnancy. This mom in Oklahoma City says, Look, I know there is a shortage of organs for transplant for other kids. I am going to have this child and when the child dies, which inevitably will happen, I would like for the baby to be an organ donor. At least this could help other children.

Many people say that this is brave, that it is an ethically commendable thing to do, however, it is a more complicated issue, I fear. Many kids with anencephaly also have other organ problems. Hearts are often defective in these children. The reason the kids inevitably die is that the brain damage that they have as result of this condition is so severe that their organs stop working because the brain stops working.

However, if you have the child and you are thinking about organ donation, then you might put the child on organ support. You might have the child immediately sent to the ICU. If you do that, what happens is the machines can keep this baby going for months. That makes it hard for the family to then have grief and experience the loss of this child. Nurses and others begin to say, "What are we doing with this terminally ill child—maintaining his life and waiting for him to die despite the machines, so that we can have an organ donation?"

This was tried decades ago. Eventually the idea of using this type of child as an organ donor was abandoned because it was tough on the families and it was very tough on the caring staff. I admire the woman's intent to try to have her baby help others. It may be that heart valves or some other organs that do not require very much in the way of blood supply could be used to help someone else.

In general, this is a very tough situation because you are going to be extending the life of a child artificially to obtain organs, a child who otherwise would have died much sooner, more quickly, and with less expense and less resource expenditure. I am not saying that we should not do this, but we must think hard about what the long-term impact will be on family and staff in trying to prolong the life of an infant with a terminal condition just for organ donation.

I am Art Caplan. I am at the Division of Medical Ethics at New York University's Langone Medical Center. Thanks for watching.

Talking Points: Is It Ethical to Use Anencephalic Newborns for Organ Donation?

Issues to consider:

  • The Centers for Disease Control and Prevention estimates that each year, about three pregnancies in every 10,000 in the United States will have a fetus with anencephaly. This means that about 1206 pregnancies are affected by these conditions each year in the United States.[1]

  • Some say that it is cruel to put an infant on life support for this purpose, because it means that healthcare providers will have to withdraw the life support, causing the infant to die, in order to use the organs.

  • Some healthcare professionals are concerned that some diagnoses of anencephaly might be incorrect.

  • There are some healthcare professionals who reason that the practice of transplantation of organs from anencephalic newborns could open the door to considering other living people as organ donors, eg, those in persistent vegetative states or the severely disabled.

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