Friday, May 22, 2009

Judge Smails writes in:
I agree with you that anyone who withholds medical care from a child is doing something seriously wrong. And while I generally think that any radical ideology --- not just religious ones --- can produce these kinds of mentalities, i think there's a much more interesting question in all this.

Namely, how much discretion should parents have in the medical treatment/non-treatment of their children?

I experienced this first hand when [my wife] was pregnant with [my child]. We were at one of the first checkups and the doctors asked us if we wanted to have the test done for down's syndrome. I asked if it was invasive and they said yes (it's an amnio test that has something like a 1% of complications or miscarriage). So I then asked what good could come from finding out if the baby had down's syndrome. They hemmed and hawed until I determined that what we were really talking about was abortion. I told them that I thought aborting a DS child was disgusting, and that we would pass. They then threw in the (more reasonable) possibility that we might just like to know ahead of time, such that we could prepare ourselves mentally for a DS child. But to me it was a no-brainer, I'm not taking a 1% chance of miscarriage just so I can be better prepared for some unlikely outcome like that. We politely declined.

But here's the thing: what if something could be done? What if, 10 years from now, they can "fix" down's syndrome pre-natally? That might change things for me. On the other hand, I'd still be queasy about doing a test with a 1% miscarriage rate, just on the miniscule chance that the baby has DS. I'd feel even more queasy about looking down on parents who chose not to have the test and ended up with DS child, and even more queasy about a government regulation that required you to get the test.

This is a topic I've been thinking about quite a bit lately, both as part of the on-going health care debate and as part of the genetics class I taught this past semester, in which each student had to research a genetic disease. Does the severity of the disease, at some point, compel the government to step in? Does a government that is paying for the health care have a right to step in? I think we'd all agree that, in terms of children, the rights of parents are not infinite, and the rights -- or perhaps, obligations -- of government are not zero. In the near future, it will be feasible for people of even modest means to get a genetic profile -- maybe not an entire profile, but certainly sequenced for known disease-causing alleles that could be passed on to an offspring.

Let's say that both parents learn that they are carriers for the recessive gene for Batten Disease, a truly horrific juvenille-onset neurodegenerative disorder. The affected are blind by age 10, start showing mental decline by age 15, and are dead by age 25. So what options to these parents have? First is to do pre-implantation testing -- take eggs from mom (hardly a simple or cheap proceedure) and sperm from dad (dads always have it easier), fertilize in vitro, screen out embryos that received a disease gene from both parents (1/4 of them) and then implant some of the good embryos into mom. This would be quite an expensive and laborious proceedure, and I don't really see the cost coming down any time soon.

The other, much cheaper option for these parents would be to get pregnant the usual way and then test the fetus -- and just for the purpose of clarity, I'm going to ignore the slight increase in miscarriage, because I'm more interested in the ehtical debate rather than limitations of current medical technology. There's a 1/4 chance the fetus would test positive for Batten Disease. If there's a positive, have the baby, or have an abortion? I'd opt for an abortion. Perhaps this is another way of saying that I don't see much of a difference between a newly-fertilized egg in a tube and a 3 month-old fetus.

But the waters get murkier when we're talking about less "in-your-face" diseases. Hemophilia? Increased risk of skin cancer at age 60? Attached ear lobe? At some point even the most science-minded, cold-hearted of us will say no, you probably should not have an abortion to avoid a child who cannot roll his tongue. Of course, when I say that, it is not because I've suddenly become squeemish about abortion -- being pro-choice and all -- but rather that the cost of an abortion (risk to the mother, financial cost, etc.) are not outweighed by selecting one genetic variant over another.

I do not think the government should play the role of arbiter and prevent this woman from having an abortion, just as I do not think the government should enforce the abortion of a Batten Disease child -- actually, my logic runs in the reverse: because I think the government should not enforce the Batten abortion, it then follows that the government should not prevent the tongue-roll abortion, no matter how silly I regard the latter.

I suppose this is the cost of a free society, namely that others around you are going to draw lines at wildly different places than you do. One approach would be to say that's fine, you make your decisions and I'll make mine. The second approach would be to villify those who draw their line far away from your line and attempt to use the power of government to make your line the legal standard. I obviously put "reproductive issues" in the first basket, but I also put a heckuva lot of things in the second basket: through the last century -- voting rights for women, civil rights for blacks, environmental regulations for industry, marriage rights for gays. I'll ponder my apparent ideological inconsistency and let you know if I come up with anything.