- Published: October 10, 2012
- Written by Joshua Jackson
Anencephaly is a condition which leads to the failure to develop a forebrain. (1) It occurs in approximately 1 in 10,000 births. (2)
The condition does not preclude the operation of basic bodily functions souch as respiration and circulation.
However, perception, personality, memory, and emotion would be absent in anencephaly.
As such, medical professions are likely to consider anencephaly a sufficient criteria for medical futility.
Currently state laws in this area on are commonly based on the Uniform Determination of Death Act which
states that the "irreversible cessation of all functioning of the brain, including the brain stem" (3) is death.
This specifically does not include cases of anencephaly where the brain stem is still active.
One such case was that of one Baby K, born in October 1992. (4) The mother of Baby K sought to force the hospital
to provide treatment for respiratory distress. The courts were reluctant to go against the existing definition of death
and found that the hospital had an obligation to provide care. (5)
Although neuroscience cannot yet definitively demonstrate that consciousness is isolated to the forebrain, it does appear
likely that this is the case and that legal codes should be updated to reflect the principle our ethical obligations to
something born without one are similar to our ethical obligations to the placenta.
1. http://www.ninds.nih.gov/disorders/anencephaly/anencephaly.htm NINDS Anencephaly Information Page
2. http://ghr.nlm.nih.gov/condition/anencephaly Anencephaly - Genetics Home Reference
3. http://uniformlaws.org/ActSummary.aspx?title=Determination%20of%20Death%20Act Uniforn Law Commission - Determination of Death Act Summary
4. http://www.ascensionhealth.org/index.php?option=com_content&view=article&id=237&Itemid=173 Ascension Health - Healthcare Ethics - Baby K
5. http://www.nejm.org/doi/full/10.1056/NEJM199405263302120 Annas, George J - Asking the Courts to Set the Standard of Emergency Care, New England Journal of Medicine vol 330 no 21 pg 1542-1545