For me the key ethical distinction is between the autonomous reproductive choices of individuals coerced reproductive decision-making by the state.
Which sounds pretty good on it's face. But what about other coercive elements? And what about coercion for humane purposes. With these questions in mind, I would like to explore them through the consideration of Lysosomal Storage Diseases. Two key elements tie most LS diseases; They are almost always fatal, with few having any available treatment and exceptionally painful for the victim. And most of them can be found through prenatal testing. To make them perfect for this question, there are a few LS diseases that can be treated, but said treatments include some of the most expensive drugs ever created, running from $250,000 to $450, 000 per year for life. Also, it is possible to pre-test potential mates who have a heightened expectation for some LS diseases, such as Tays Sachs, for the recessive genes.
So to start, is it entirely unworthy of even asking if maybe it would be ok to require pregnant women who have a fetus that tests positive for infantile Tays Sachs terminate their pregnancy? Or is it unreasonable to require couples who both carry the recessive gene for TS not reproduce? To put it more bluntly; Is it unreasonable to restrict the reproductive rights of someone who is extremely likely to have an infant that is going to suffer horrendous pain and die before their third birthday? I don't have an easy answer, but I would argue that it's unethical not to consider these questions.
My next question would be one of financial coercion. One of my closest friends is married to a women who had a brother with Hunter syndrome. Their daughter is a very close friend to my son and a child I love very dearly. She is also entirely unaware of the terror her parents went through when they first learned they had conceived. Because there was a significant risk that is that lovely little girl had been a boy, that he would have had Hunter syndrome. At the time, there was absolutely no hope for a person with Hunter syndrome. Just pain, retardation and death by thirty - usually in adolescence.
But there is a new hope. The FDA approved the drug Eleprase for the treatment of Hunter syndrome in 2006. But this treatment isn't without significant drawbacks. It requires a weekly IV infusion and a risk of anaphylactic reaction requires it be provided in a facility capable of handling a serious medical emergency. It is also a maintenance drug, that must be continued for life.
Finally, we get to arguably the worse drawback. Eleprase treatments come at a cost of around $300,000 annually. So who should be required to pay for these treatments? Should the insurance company have a right to not cover the cost, for children who's parents knew there was a significant risk of Hunter syndrome and chose to have that child anyways? Should the state cover the cost? Who should lose out on care because the state is covering the cost? (i.e. where should the rationing be placed to cover it?)
Now you can tell me that LSD's are really quite rare and that I'm throwing hypotheticals out here that have little real world impact. First, let me be quite clear, this is not minimal real impact to those who experience these diseases first hand. But more importantly, we are learning more and more every day about the genetic predisposition for a lot of other diseases. These are questions that could well have a far more significant impact on more people in the future.
And please, lets not make any assumptions about anyone's motives or beliefs. This is a touchy topic for a lot of people, including me. I'm not a fucking monster trying to force anyone to kill their babies, nor am I a monster for deciding that my youngest wouldn't be with us today if he his amniotic had tested positive for down syndrome. The next nasty email I get about this will probably be published on the front page of this blog, with contact information.