What would you do?

Like my very first blog entry, I wrote up a post in a forum that I thought I should copy here. A forum thread asked the question "What would you do?" in this situation. The summary is parents asked to have their disabled child (suffering from static encephalopathy) undergo surgery that would prevent her from maturing into an adult. The child is unable to move, talk , keep her head up or swallow food. Please read the above link for more details.

Here is my response to "what would you do?".

The ethics get difficult when you justify things with "lacks the cognitive capacity". That is a slippery slope that can be used to make many things seem okay. I would also contend that the mind is a difficult thing to judge and that what they may think of as an intractable state now may be shown in the future to be more capable.

Let's put it this way - you've seen "Awakenings". If you had done something to one of those patients because they can't move or decide or talk, but then suddenly found a way for them to become capable of communicating, you would realize that it may have been the wrong thing.

Anyway, I'm more with Wingnut's first opinion, which is "let things progress on their own". It would take much convincing to move away from that idea. Mainly because the target of the changes has no say.

I have no problems with people deciding for themselves what they should do - surgery, death, whatever. They have to make the decision and consider the consequences. And I don't have to agree with them and I may advice against it, but they have the final say.

This case is more like the case of the identical twin boys, who had some problems when they were quite young. One of them had some problems with his genitals and the doctor advised surgery to make his genitalia into a girls. The doctor had an ulterior motive - he thought that changing gender was something that could be done by environment, not genetics and here was the perfect opportunity. A real-life twin study with only environment between them. The 'girl' had horrible problems growing up and eventually, as an adult, chose to live as a man. There was an enormous personal cost - that person's life was ruined.

The point is that the individual didn't have a choice and it caused problems. This child has no choice, so I think this surgery should not have happened. I would not wish the decision or the raising of the child on anyone - it will be an enormous task either way.

I really hate the statement (something like) "she would have had enormous breasts, so by stopping this growth we prevent possible sexual abuse". That's akin to saying 'this boy's father was a murderer, so we should imprison him to be safe'. The justification is on a possible future event that depends on the actions of other people. If the parents could see the future so well, why did they have the child?