thoughtful sadness

[jrtom]

http://news.bbc.co.uk/2/hi/americas/6229799.stm

I really don't know what to think about this.

I'm generally against surgery that doesn't provide some necessary medical function...but "necessary" can be slippery.

The parents have acknowledged that their child is never going to be mentally more than three months old, and I find myself wondering what I would do if I knew that I was going to have a child with that condition--or if I found out that I already had one (i.e., it wasn't apparent before birth). Especially considering that we all went through that period (of being three months old) at one point.

I don't think that there's anything that could be done with this situation that I'd be satisfied by.

Update: Here is the website that the parents have put up: http://ashleytreatment.spaces.live.com/

Something that occurred to me after the initial flurry of comments (that's come to mind in analogous circumstances before): since Ashley (the child) is expected to have a normal lifespan, her parents are implicitly committing someone else--her siblings, other relatives, the state--to taking care of her once they're gone. This complicates the moral issue still further.

Comments

Re: Surgery

[fdmts.livejournal.com]

I've thought about this overnight, and it seems clear to me in the light of morning: I disagree with the decision to keep this child alive, but I think it's certainly a decision that should be left in their hands. I think that in the long run, the family would be better served by letting her pass on and either adopting or having another. They are signing themselves up for decades of hard work and frustration. That energy could be better spent. Given that they are going to keep her alive, it makes a certain amount of sense to modify her body so that she'll be easier to care for.

As we gain more and more power to help marginally survivable humans live arbitrarily long periods of time, and to modify our bodies in really cyberpunk ways, we're eventually going to have to look at the underlying ethical issue of what it means to be "human." I hope that we realize that we're not really all that special. That the moment of birth (or the second trimester, for example) does not confer any particular status, nor does any particular level of genetic similarity with a reference human. Ethics ought to be built on the capacity for joy and for suffering ... not on a perceived similarity to "me."