I was making that hellaceous drive in to work one morning listening to CBC radio (sometimes they have very interesting topics) instead of the iPod. A man with the Huntington's disease gene was being interviewed. Not about his disease, which in all likelihood he will suffer from later in life, but on the use of genetic screening to choose children without that gene. The couple chose to do this using in vitro fertilization rather than natural conception to avoid the potential ethical quagmire that would result if the fetus was shown to have the gene. The result was a set of twins that will never have to look forward to nervous degeneration later in life.
Enter an ethicist (why do they always weigh in to screw things up?). Her position is that since we would not think it ethical to eliminate people with undesirable characteristics, that no matter how positive (as is evident in this case), the outcome the ends do not justify the means. As Michael Shermer would say: Nonsense on stilts. This is nothing more than another case of absolute ethics throwing the baby out with the bathwater.
Is genetic screening a form of eugenics? Probably (it has a rather broad definition according to the Wikipedia), but there is a vast difference between this case and the Nazi program that this word brings to mind. In the Nazi case, this was an attempt to create 'perfect' (whatever that means) humans and won't work. Selecting for certain traits can have unpredictable and deleterious results in other areas. This was seen in the famous Russian experiment with silver foxes. What happened when these animals were selectively bred for their tameness had unexpected consequences: floppy ears, coat color changes and curly tails (very much what happened in the domestication of the dog).
I would hardly place screening for Huntington's disease in the same class as Nazi eugenics programs when the end result is the certainty that your children will not become afflicted with a debilitating disease. Few of us can imaging their relief as parents for having undertaking this expensive procedure to ensure their children's health in later life, at least insofar as passing the disorder on to them. This was something I don't think the interviewed ethicist even considered when assessing her position.
While it was immediately apparent to me that the ethicist's position was ridiculous, I had to ask myself, "Why?" The question she asked was whether people suffering from Huntington's or other genetic conditions that may be construed by society as being undesirable, such as dwarfism, would want to be discriminated against or eliminated because of their condition. The answer is obvious. Life is preferable (almost) no matter the circumstances. But was this the correct question to ask? I don't think so.
One of Michael Shermer's main moral tenets is that if you are unsure as to the morality of an action (especially when it impacts on others), ask first. Well, we cannot ask a blastocyst and expect a response (which is one of the reasons that I think calling an unthinking, unfeeling collection of cells a human being is ridiculous), but we can ask people suffering from these disorders whether they would rather live with their condition given the chance to have a life without it. I think that that is the real question, and I think that the ethicist interviewed completely missed the mark.
The current legal position regarding genetic screening in Canada is dangerous, however. There is in fact no position at all. This leaves open the possibility of truly unethical uses of this technology, such as selection of sex (some cultures are notorious for their desire to have only male offspring). Fortunately, as is the case for a representative of an IVF clinic, screening for sex is done only in conjunction with testing for sex-determined disorders. With proper regulation and oversight, genetic screening can be another effective (and in the case of genetic disorders, currently the only) tool in the fight against disease. It was not all that long ago that IVF itself presented moral and ethical issues, but its presence in today's society is all but assured. Why not this?
Does religious dogma have anything to offer in the form of moral guidance in this context? Long answer: No. (Anyone who reads my blogs will have seen this coming...) Moral codes based on a society 2000 years ago simply cannot even relate to ethical and moral dilemmas presented by today's technology, a word itself only 150 years old in its current usage.
The problem with all absolute moral systems is there inability to adapt to new situations. For instance, how does religious dogma handle the disposal of unused blastocysts when abortion is considered immoral? The couple in the example here donated them for scientific research purposes, for which I applaud them. If use of stem cells from aborted fetuses is wrong, then is the use of blastocysts which will never be used (and hence have no potential for becoming human beings) for research also wrong? I put it to you that 2000 year old Abrahamic religious dogma is completely incapable of dealing with these situations and a new, more flexible set of ethical principles is needed.
More on that in a later blog. I have to get work done some time today....