Autonomy, Coercion and Reproductive Decisions

There are a lot of directions I want to go on this topic, but I am finding my time sharply limited and if all goes well it will be even more limited soon. So I am going to have to let the flow of this discussion go where it will for the most part, rather than exerting much control over it. In that vein, Comrade PhysioProf has made a comment that rather nicely dovetails with the one right after it, made by Becca.

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.

Eugenics, eugenics and me.....

Sorry about the delay, but I have been much more busy than I intended. In the great frozen north, we have had enough snow that it has caused some problems on houses that have insulation issues. Among them is the home of a very good friends mother. Having several years experience dealing with roof and siding issues, I realized that there is a huge problem in the making due to the very strange weather we've been having. So I am helping said friend remove all the snow from the roof and melt off some major ice dams that are putting the eves at risk. I'm getting to old for this shit. (Not that I'm old, just that several years of roofing trashed my knees and lower back - vicodin will be my very close friend today)

So I would like to continue the discussion on eugenics, but it will have to wait until I have managed to get this roof in a better place. In the meantime, please feel free to jump into the conversation already going on here and read down the line for something of a preview of todays posting.

In which I Discuss Student Stuff......

For the few folks reading this who may not be aware, I have recently re-embarked on my educational journey - becoming a formal student for the first time since I dropped out of high school sixteen years ago. As part of this journey, I am taking several classes that are prerequisites required to complete the program I am taking. I intend on discussing some of those classes here, because one, I'm spending a hella lot of time in them and two, because some of the things I am studying are relevant to discussions I am trying to foster here.

One of the ideas I am tossing around, is posting some of the papers I am writing at any given point. For the most part they will tend to be papers on topics that I am rather interested in, given that I am embarking on a course of study that I find interesting. At the moment, I am taking a college writing and research class and have managed to get an instructor who is allowing me to pick the topics I write will have to write two major papers on. And this is where you, my readers can come into my world.

I would like to know what you think I should pick as a first topic. I was originally thinking I would write a paper on harm reduction and a new addiction paradigm, but the recent discussion about eugenics (knowing that I am going to spend a fair amount of time researching and blogging about it) has led me to consider writing the paper on eugenics. And of course there is literally a world full of other topics to consider. I am definitely going to keep the topic within the realm of science, either psychology, neurology or genetics. But within those categories are a whole lot of options. So please weigh in. What would you like to see me write about? Given the same assignment, what would you choose as a topic? If you were restricted by the parameters I mentioned, what would you choose?

Also, would it be silly to post papers? I promise they will be nearly as edge of your seat exciting as the breathtakingly thrilling posts I write. Or more to the point, they will be no more boring than the sorts of stuff I write already. They will be longer though. Probably quite a bit longer. And it has been pointed out to me before, that I am certainly not going to gain a reputation in the blogosphere for my brevity.

I know most of the people reading have spent far more time in school in recent years than I have (especially those of you who are profs) and probably have more recent experience with this sort of thing. And now that I mention it, if you happen to be a prof, feel free to tell me what you like, or don't like to see in a paper. (And in case any of my profs stop by) Did I mention that I have the most remarkable and stimulating instructors ever?

I will probably soon be posting my first paper, in which I discuss;

To learn to think is to learn to question. Discuss a matter that you once thought that you knew "for sure" that you have now begun to question.

When reasonably possible, I will also try to bring into the discussion here, the things I am studying in school. Coincidentally, the discussion about eugenics and where it has gone thus far, in my humanities class today, we watched a video that I have seen before, from the Genographic project, something that my dad has taken part in and something I would take part in if I could afford to. Unfortunately the whole eating and not living in a box thing makes that impossible at the moment. But be assured, I am going to get around to blogging about it, in relation to our discussion on eugenics. I actually have had the video from today in mind since this conversation came up again.

Oh, and I am also hoping to get back into talking about talking to our kids about drugs. And sex. And other dangerous things. Keeping in mind that mine are one and seven and that we started the discussion with the seven year old, three years ago (albeit in a very general fashion). If this is an interest to anyone, please feel free to pressure me to hit on it sooner than later....

Eugenics, Yes, I said Eugenics; Is there a problem?

Please check out and even contribute to the comments section. We have a decent discussion going and would love to hear from you too.

At this point if you're reading this, it is quite likely you've only recently discovered my blog. Mainly because I quite recently posted for the first time in a very long time. I'm really glad that I did, because someone managed to go back and hit on a post I wrote over a year ago (granted there weren't many posts between here and there). I'm glad, because I really think this is an important discussion to have - one that becomes more important by the day. And the comment left by Juniper Shoemaker is worth addressing. And to make it really fun, Juniper is a geneticist in training. (Juniper is also the bittering agent in the last beer I had, an awesome brew by my friend Mac back in Portland.)

For those who might not want to read the original post, I am basically making the argument that we need to get past the hysterics that almost inevitably ensue when the word eugenics is brought up. I would like to be clear that I am not advocating for or against eugenics, though there are certainly ideas involving eugenics that I am strongly against. All that I am advocating for is a rational discussion of eugenics, much like Richard Dawkins did a couple years ago.

The reason this is important right now, is that a lot of controversial things are happening that should be fostering important conversations. But those conversations aren't really happening and I suspect that the reason they aren't happening is because the term eugenics is so very loaded. So before I get into addressing Juniper's comment, I would like to point you to a very illustrative post that discusses eugenics. (without ever actually using the word)

Turns out that a couple had been searching for awhile to find an egg donor who looked like the mother and possessed certain attributes that clinics do not approve of as legitimate donor criteria.

Yup, that there is a shining example of eugenics in action. It's not abortion. It's not killing a flawed infant. It's not sterilization and it's not genocide. It's simply a couple who needs a little help having a child, a couple who wanted to exert a little control over the genes of their child to be. Not really very controversial, it's not much different than the decisions people make when choosing a mate they might reproduce with naturally. But on to Juniper's comment....

The problem with eugenicists is that they ignore the fact that the desirability of ANY trait is dependent on its environment. The environment always changes. Traits you cannot possibly conceive of as "desirable" today could prove desirable tomorrow for a myriad of reasons. For all we know, these traits could include hypertension, bipolar disorder, Down's syndrome and autism. Reality is bizarre and unpredictable.

I have no problem with that. I'm bipolar and also have very severe ADHD. And guess what? My son has been diagnosed with severe ADHD and probably has either some of my other neurological issues or those of his mom. I have very little doubt that my youngest will also exhibit something of our neurological issues too. I can even accept that there may well be some value in the propensity for DS as well.

I will also go as far as saying that the idea of aborting a fetus that has tested positive for DS is not a black and white decision or an absolute net positive. This, in spite of the fact that if our incredible one year old had tested positive as a fetus, he would not be with us today. No question, no discussion necessary. Had that test come back different, we would have terminated the pregnancy. Because while the idea is far from black and white, our ability to deal with it is absolutely clear. We already have a child who needs a lot of special attention. Under ideal circumstances, the sibling of a child with that level of disability is going to lose out. In the case of a sibling who has special needs of his own, it's a recipe for disaster.

But this statement of Juniper's is really the crux of the matter. She is presenting one of the best examples of why we really need to have this discussion. Because right now, it is possible to test for a variety of traits, invitro and make decisions to abort based on those tests.

Call me a hypocrite, because I will freely admit that in a sense I am one. I am fully aware that any child I produce is likely to carry certain traits of mine, that aren't all sunshine and roses. Having the neurological issues that I have is not an easy burden to bear. But I have reproduced and more than once. And I think that the value that comes from having neurochemiustry such as mine, is ultimately worth the hardship it entails. Honestly, if it becomes possible to test for ADHD invitro, I would have serious issues with the notion of trying to eliminate that trait.

Yet without question, I would have no problem with terminating the pregnancy of a fetus that has tested positively for DS. I'd like to say that this is only because of the child I already have. But being perfectly honest, I don't think my reaction would be much different if I was childless. Dealing with a child with that level of need is not something I think I am suited for.

And then we have a somewhat gray area for me (but not for a lot of people), autism. I suspect most people out there who would terminate a pregnancy for DS, would also terminate a pregnancy if there were a significant risk of autism. I'm not one of them, but that is because I have a fair number of autistic friends. At the same time, having the older child I do, I am not sure given the option, I could, in good conscience bring a fetus to term that carried a significant risk of severe autism.

These are not black and white questions, but they are well on there way to being a fact of life and are indicative of why we need to be talking about eugenics.

However, it irritates me when eugenicists assume that the only reason why people get pissed off with them is the "controversial" nature of the subject. That implies that people have to choose between a ringing endorsement of a loaded practice or a sheep-like unthinking aversion to the practice.

Honestly, I think that this is why we need to separate Eugenicists, from ownership of eugenics. Because I really don't think it's reasonable at all to allow anyone lay claim to a concept that is as broad as eugenics. Eugenicists, as Juniper is describing tend to fall into a fairly narrow range of beliefs. And those beliefs are not based on actual science, any more than the beliefs of the so called intelligent design movement, or evolutionary psychology.

I get pissed off because people who like the idea of eugenics usually have a shitty understanding of evolutionary theory.

I would take that one step further and say that eugenics only has a peripheral relationship to evolution at all. Because eugenics is really contra-evolution. Not that being contra-evolution makes eugenics inherently bad. But the claims made by Eugenicists are worse than ignorant, I believe that for the most part they are flat dishonest.

No matter how dishonest, no matter how ignorant their theories, I think it is long past time to take the concept of eugenics away from the Eugenics movement. It is also way past time to take the concept of eugenics away from the specter of the Nazis. Because like it or not, eugenics is a reality and the hysteria surrounding it is preventing us from having some very important discussions with very profound social implications.

Eugenics Is Not A Four Letter Word

Quick note, the baby is not here yet, though momma is bursting at the seams. We are incredibly busy all around, preparing for the baby, preparing for Christmas and preparing for our adventures into the world of homeschooling. I have managed to find some work to cover a little break that I didn't need, which should keep us afloat. On to the posting at hand then.

I have paid little attention, as I have been busy, but Seed's SciBlogs have been been hammering away at one Jim West of the Discovery Institute, a “think” tank devoted to pushing the teaching of creationism into U.S. Public schools. Suffice to say that DI is nothing more than a PR organization, rife with dishonesty. PZ Meyers started in on West a while ago with this post, which I admit I haven't actually read (I include the link for context only).

Lately, sciblogger Greg Laden joined in the fray, ruffling the feathers of sciblogger Orac. In short, Laden made some rather outrageous claims about the origins of forced eugenics programs, both those that happened in the U.S. (dark enough themselves) and those of the Nazis (i.e. The extermination of millions of Jews and other undesirables). Orac corrects the mistaken notion that the intellectual propagators of these atrocious eugenics programs were mostly Christians. In comments on both Greg's and Orac's posts, Colugo adds a lot of very interesting information to the mix.

Now I am not going to argue that the early part of the twentieth century was not to a strong degree, a world gone mad with some truly frightening notions about eugenics. From forced sterilizations, to mass exterminations, forced eugenics was a very ugly, fundamentally bigoted beast. But that is not the whole picture, not by a long shot. There is something important missing in this discussion of eugenics, that is the notion that not all eugenics is bad. Indeed, much of what falls under the heading of eugenics isn't even controversial. Unfortunately, some of it is controversial. Some of it skates very fine, ethical, dare I say, moral lines. The problem with making eugenics into some bogey man, is that it inserts a certain hysteria into a very important discussion.

So what is eugenics?

Let me start with this simple exercise. When you were choosing a mate (assuming you are a breeder of some sort), did you ever consider what your children might look like, if this person or that, was the mate you chose? Did you ever consider their intellect, for the same reason? In short, was one of the factors in choosing your mate, what they might contribute genetically? If the answer to any of these questions is yes, congratulations, you practiced a very basic form of eugenics. Not the least bit controversial, evil or unreasonable.

Lets then up it a notch. I have gotten to know quite a few folks in the world of neurodiversity. Many of them great folks. Several of them have made the conscious decision not to reproduce, because they do not want to pass on what are likely genetic disorders (at least influenced by genetics) to the children they would produce. I.e. They have identified some genetic trait that they believe it would be best not to propagate and therefor chosen not to reproduce. This too, is a form of eugenics.

Now we get to some meat. Herein lies a more controversial aspect of the discussion of eugenics, one that I will state outright, I don't have a problem with. Nonetheless, there are plenty of people who have serious objections, including readers of this blog. Right now, today, medical science has progressed to the point that we can identify many disorders and congenital diseases, in vitro. My partner and I had a bit of a scare, when the nurse called about an elevated risk for downs syndrome, with the baby that is due any time now. Lets just say that she handled it badly – leading us to believe it was a significant risk, rather than a less than three percent risk.

We want this baby. Our whole family is excited (no matter how I whine about it). But with a child already, who has followed in his papa's ADHD footsteps, there is no way that we could raise a child with those sorts of special needs. Not without seriously undermining the care and attention that the son we have now requires. Nor would we find it reasonable to burden society with such a child. It would have been a hard, but simple answer; abortion. For those who have rather profound objections to the notion of abortion, please do not judge me too harshly. Yes, this decision was reached without very much discussion. Mostly we just looked at each other, already knowing the way it would be. It took little time to consider it. This is because we are all too aware of the implications.

Nor is this limited to down syndrome. There are a host of disorders that can and routinely are diagnosed in vitro. While it is not a frequent occurrence, this does lead to decisions to terminate pregnancies. This too, is eugenics.

Finally, we come to even more controversial aspects of the discussion; where is the science going?

Our understanding of genetics and DNA, is increasing at an exponential rate. Already we have developed many gene therapies for treating certain disorders, Tays Sachs being a huge one. We are very close to viable therapies that can be started in vitro (I believe some already are). The question becomes, what is acceptable? What can we reasonably eliminate from our society? For instance, what about ADHD? Bipolar disorder? Schizophrenia? Autism? What about homosexuality?

The flip side of this, is the discussion of enhancements. What if it becomes possible to enhance certain characteristics, such as intelligence, endurance, fine motor skills, or spacial reasoning? What about absolute engineering, such as Aldous Huxley describes in Brave New World? A vast panacea is opening up before us, right now. Unfortunately, we are too busy freaking out over the terminology to actually have a serious, coherent discussion. Eugenics is not a four letter word, but it does carry rather serious implications, that require their time in the limelight.