Saturday, January 13, 2007

Peter Pan

I ran across an interesting article the other day. Those of you that know me probably know that I love biology- I started college as a bio major, worked at biology/science camps over the summer, and generally find a lot of biology topics to be very interesting.

Anyway, let me summarize this article for you (but please, feel free to read it all!): parents of a severely disabled girl named Ashley have given her a treatment to stunt her growth so that she is easier to care for. Ashley was 6 years old (she is now 9), with a disability that both doctors and parents doubt will improve. She was given intense hormone therapy, a hysterectomy, and breast bud removal. Her parents argue that this treatment will benefit Ashley, but there are obvious ethical concerns. Even if this case makes sense, some people seem to worry that the case could be a dangerous precedent for future cases.

I don't profess to have any clue what the parents of a severely disabled child go through each day; I have done some babysitting for a child with some disabilities, and even for short periods of time, I can see that it would be a huge challenge. It's great that these parents want to be able to continue caring for their child, I think, and they definitely have plenty of arguments for the "Ashley treatment," as they have called it. Ashley's doctors have been up front about the procedure, going through a hospital ethics committee and publishing about the case. I can understand much of the reasoning they say, but at the same time, I'm not sure I can say I believe it's right.

Stunting her growth is interesting to me because I had a friend with the opposite problem. She was abnormally small and short, and used hormone therapy over the course of a few years so that she could reach a typical height and weight (she's actually taller than me now, and I'm about 5'4). The shortage of growth hormones was also likely to affect her in other, less superficial ways, so this friend and her parents decided to pursue the option. However, this case is very different from Ashley's; not only was my friend's treatment correcting something abnormal and harmful, but she also was old enough and smart enough to have some say in the treatment (and eventually, give herself the shots each day).

In Ashley's case, she has no say in the treatment (her parents aren't even sure that she can recognize her family). Ashley was also on her way to physically end up like any human without a special condition. Part of me feels strange about that, but part of me doesn't. After all, each person has their own unique DNA, which gives the body 'instructions' for how they are supposed to turn out. Who's to say that it's 'right' to alter anything about the body, whether we think it's abnormal or not? Then again, who can accurately predict whether or not the treatment (especially the hormone therapy) will have any unforeseen long-term effects?

I'm also kind of afraid that this sort of treatment will be used more frequently. The thing with moral dilemmas is that there are arguments to go both ways, and that there is rarely a definite reason why they should or shouldn't occur. In this particular case, it seems okay to me- but the "Ashley treatment" is in no way necessary. Where will the boundary of right and wrong fall with future cases? What if the surgery is used for superficial reasons? If someone's entire family is tall, and they just don't want to have to buy clothes in special stores, would we allow them to stunt their growth?

Most of Ashley's parents' defense seems to be reasonable, but most of the reasons essentially are that she will be easier to care for. Ashley may benefit from this; she may not. Ashley's parents certainly will, though. Are parents too biased to make this sort of decision, or are they the only ones informed enough about the situation to make it?

It's a tough case, and lots of people have given their opinions on the matter. When it comes down to it, though, the case didn't really become public until three years after the girl began treatment. The parents and doctors have tried their best to explain the point of view that led them to pursue the treatment, and while others may argue... essentially, it's to no avail. No matter what anyone says at this point, this specific case is settled. Right or wrong-- Ashley has successfully undergone the treatment, with no known complications, and any damage has already been done.

I don't know whether it's right or wrong... but I sure hope the treatment really works well for Ashley.

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