The bioethicist believes that life should be divined by cognizance, by sentience, and by the ability to interact with the world. Infants who can’t do that should have their lives evaluated in very different ways.

Question: Should parents be allowed to euthanize severely disabled children?

Jacob Appel:  Absolutely.  I think the Dutch have used a system called the Hornussen Protocol for almost a decade now.  And under this principle, they evaluate children that are born with either severe defects or in severe pain and assess their likelihood of surviving into meaningful adulthood, and if the answer is no and two physicians a the parents agree upon this, then the baby can be euthanized and they do it very pain-free and very quickly in the first few days of life. 

Only in our culture is the obsession with keeping life going at all costs, even when the pain is immense and the likelihood of survival is very low come to the fore.  In many cultures historically, the ancient Romans, for example, didn’t view life as a whole in it’s beginning until well into childhood.  Understanding that infant mortality was high and that sometimes the suffering an infant went through made it not worth the **** alive. 

The real interesting ethical question is if our goal to prevent the childhood suffering.  Where their parents should actually have a say in this process.  Whether, and I’ve written about this in the past, if a child is going to suffer immensely over the course of several weeks and die, would the parents have the right to say, we want this process to occur rather than injecting the baby with Potassium instantly, or whether **** itself is a form of child abuse.  If an older child was to need a medical intervention or medical procedure and without it they would suffer severe pain, we wouldn’t let adults make that choice.  Why do we let them make the choice the other way with infants?

Question: Is it tantamount to child abuse to let such disabled children live? 

Jacob Appel: I think it can be.  I think we are very reluctant to condemn parents in those situations, in part because it is a very stressful situation.  These parents themselves have suffered.  I wouldn’t want, for example, criminal penalties to punish parents in this situation.  But I think in terms of determining what should be done with a child, the best interests of the child’s standard should be the standard we use.

Question: Why do you think life should begin after seven days?

Jacob Appel: Well I should emphasize, I don’t think there is much value in having an arbitrary hard and fast rule.  One of the reasons I’ve actually said the law should use birth, for the most part as the standard would it would be very easy to figure out whether the baby is born or not born.  Figuring out whether an infant is six days old, or eight days old is a much harder project to endeavor.  Particularly, in situations where the baby has been abandoned or the origins of the baby are unknown. 

The larger point I am trying to make, and I’m not the only person that’s made this, Peter Singer at Princeton has made this for years, is that life should be divined by cognizance, by sentience, by ability to interact with the world.  And infants who can’t do that in the same way adults do should have their lives evaluated in very different ways.  And the potentiality of fulfilling life is a factor to consider.  But the suffering that an infant may undergo if they aren’t going to lead a meaningful fulfilling life is also a valid concern to think about.