This is an updated repost of a blog I posted last year about a man with Huntington’s disease. The audio feed can be found on The Current (Part II). After a few comments in another blog entry on the biological evidence of homosexual behavior vs the silly notion of it being a ‘lifestyle choice’, I thought about this entry. Not all genetic testing is bad, but I agree we are starting to wade into a moral quagmire.
Huntington’s disease is a neurodegenerative disorder with profound cognitive and motor disturbances, and typically kills its victim about 10 to 15 years after symptoms become manifest. Onset occurs in midlife, typically after victims have started their own families and possibly passed the gene on to the next generation. The chances of one parent with the gene passing it on to any one child is 50%.
The Human Genome Project has provided some hope, at least potential hope, of a cure for this terrible disorder. Certainly, it has allowed genetic testing of embryos for the Huntington’s gene, and tests for some 200 genetic disorders exist at present. One Canadian researcher, Jeff Carroll, has a vested interest in finding a cure- he has the disease himself. The remainder of the embryos were made available for research into a cure for Huntington’s.
As any good father would hope, Carroll doesn’t want any of his children to have to go through what he is destined to, especially when they will witness the effects of the disease in their father. It must be terrible when the first symptoms start, to know that the countdown has begun. What person would wish that on any of his offspring? The difference is that he did something about it. He and his wife Megan used preimplantation genetic diagnosis (PGD) to select embryos created through in vitro fertilization which did not carry this lethal gene to ensure that his children would not suffer their father’s fate. While prenatal screening can be done, it circumvents the problem of what to do when the fetus has been shown to have the gene. Jeff and Megan were understandably uncomfortable with the latter route. The result was a set of twins that will never have to fear nerve degeneration later in life.
Enter ethicist Margaret Somerville, Founding Director of the McGill Centre for Medicine, Ethics and Law (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 self-evident in this case), the outcome the ends do not justify the means.
‘Not to have Huntington’s is a good thing, but it’s not just outcomes that we have to look at in ethics. It’s what we do in order to achieve those outcomes. And if what we’re doing is wrong, then no matter how good the outcome we can’t justify that.’
As Michael Shermer would say: ‘Nonsense on stilts.’ I fail utterly to see what is ethically wrong with any part of this procedure. As with most technologies, I can see quite clearly how a particular application of this methodology could be wrong. This is nothing more than another case of absolute ethics throwing the baby out with the bathwater. She continues:
‘And although there is obviously the most humane and suffering avoiding reasons for wanting to do this, in a situation such as Huntington’s, once we start to select on the basis of characteristics that leads to possibilities of what’s called positive eugenics, designing our children, enhancing their genes, et cetera.’
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 Dimitri Belyaev’s famous Russian experiment with taming 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 think this is particularly true, since it is unlikely that there are single genes for homosexual behavior (in keeping with yesterday’s blog entry) and is more about development of cortical structures.
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 Somerville even considered when assessing her position.
And what are the consequences to society of all this?
‘We have to look at the impact on other people who have the same characteristics and what we’re really saying in these cases is ‘your life is not worth living’. And so therefor, by implication, we say that to the other people who’s lives are of the same kind. The most important aspect of this is that we’re going to eliminate whole groups of people with certain characteristics. It’s already being spoken about in the literature, that we won’t have Down’s Syndrome children; we won’t have children with achondroplasia (which are dwarf children); we won’t have profoundly deaf children; we won’t have, possibly, people with bipolar disorder, manic depression, because we’ll be able to identify genes for that. And so the cumulative effect of these individual decisions is something that we would never allow as public policy, that we would pass a public policy that said let’s get rid of all these kinds of people. But in fact, that’s exactly what we are going to do. And it’s not just the loss of those people. When we talk to those people we see as disabled, they tell us their lives are worth living, so why do we think we’ve got the right to say ‘no, your life is not worth living’? As well as that, we’re going to have a huge loss for society, of the special gifts and talents those people bring. For example, if you look at our creative artistic community, a lot of those people can have bipolar disease. And just the whole idea of that we’d be doing that, that we’ve moved from the great mystery of the passing on of life, whether life that is created is by chance of the individual person and of the cumulative next generation, to our having made a choice about who those people will be.’
Wow. That’s just…. Wow. Could she possibly be postulating that genetic diseases augment society in some manner? That it’s okay to allow people who truly suffer from bipolar disorder to remain in torment just so we can hang one of their paintings on our dining room walls? For that matter, why prevent any genetic disorder at all?
While it was immediately apparent to me that Somerville’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 undersirable, 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. I do not argue that people physically challenged can not contribute to our society, but Somerville makes it sound as if genetic screening for these terrible diseases is akin to lining people with these disorders up against a wall and executing them via firing squad. So, 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 Somerville completely missed the mark. Ask Jeff Carroll and I think it’s clear from his vicarious actions that he would choose to not have the disease himself.
Something in Somerville’s position didn’t sit well with me, particularly the strange point of view she has on asking people with genetic conditions whether their lives were worth living and without asking (to me the more apropos question) whether, if they could, they would live a life with that condition over one which they did not have it. She seems to equate a blastocyst with a genetic disorder with an adult having the same condition, something I will just never understand. Indeed, I made a guess that she is anti-choice, having the same unscientific presumptions in her opposition to abortion. It’s a bit like that non sequitur ‘how would you feel if your mother decided to have an abortion?’ So I did a little digging just now. My suspicions were well founded, it seems. She is one of those which believes that a blastocyst is a person, and why her rationale is way off. I think she embodies the whole skewed viewpoint of the anti-choice movement.
But Somerville, while completely off target, is right in her general concerns over PGN. We need to give all this technology, which consistently outpaces the law, a great deal of thought in its application. While I see no problem with eliminating Huntington’s, the comments on yesterday’s post on the potential ethical abuse by oh, let’s say right-wing religious homophobic nuts, does give one pause.
Another objection Somerville finally hits an ethical bulls-eye.
‘We’ve banned [sex selection] because it’s seen as denegrating to women, that when sex selection is practiced it’s very often because people don’t want a girl child in certain cultures. …We don’t want the current imbalances in sex that we see at present in India and China where there’s a vast shortage of – there’s something like five million missing girls in the current generation and we don’t want to have that because that’s a huge social problem.’
But this only goes to my original premise: it’s not the methodology, but the application. The reason I agree with her on this is because she has actually reasoned out her position, unlike her objection to what she sees as rampant killing of disadvantaged people.
So, what are the current guidelines for PGN in Canada? Jeffrey Nisker, Professor of Obstetrics, Gynecology and Oncology, the co-ordinator of Medical Ethics at the University of Western Ontario and the first to perform PGN in Canada:
‘As there is no regulation in Canada, the procedure can be used for any reason where the physician, scientist and patient agree, except in a few circumstances where our Assisted Human Reproduction Act has a prohibition.’
The current legal position regarding genetic screening in Canada is dangerous, leaving open the possibility of truly unethical uses of this technology.
Nisker no longer does PGN, but I don’t exactly agree with his motives:
‘After spending three years working with mice…, we had a woman in our IVF program who had what I think many people would consider a very serious genetic condition, [with a] risk of having a child with that genetic condidion. She was going through IVF anyway, … and it just seemed cruel to go through all the machinations of IVF and all the risks, then have to go through it again after an abortion… because she was bound and determined that that would be the route she would take if the fetus was found later to contain this genetic condition. …So, we allowed the woman to choose this new technology.’
Up to this point, Nisker and I are in agreement. He continues:
‘Unfortunately, somebody leaked to the press what we were doing and very soon people were calling from all across Canada to come to London, Ontario, to have PGD done. And the genetic condition they wanted to prevent in almost 60% of cases was XX. In other words, having a female child. I quit… I gave back our substantial research grant and started doing ethics research.’
Did he never hear of just saying no? That it was not in accordance with his ethics? At least I can undersand Nisker’s refusal, though it is now moot with AHR Act. Somerville’s reasons, on the other hand, simply don’t make sense at all except as an overreaching effort to further an antireproductive choice agenda.
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?
But I do see eye-to-eye with Laskin on the potential abuses of PGD, that of what I would call trivial characteristics selection:
‘I think that [calling PGD eugenics] is a gross oversimplification… I’m more concerned with enhancement. In other words, can PGD be used to select a particular type of child. It could be blond hair, blue eyes; it could be a savior sibling (you select a child so it can be a stem cell donor for an existing child), which I think is a good indication for PGD… Huntington’s is more complex because it is an adult-onset condition that maybe someday a treatment could be developed by the time this particular embryo becomes a 40 year old…’
That last statement is like waiting for the best PC to come out. If you don’t buy one now, when will you? You can’t base any treatment decision on the basis of future options which may never some to fruition.
‘If you are going to allow testing through amniocentesis, I don’t see a huge leap for doing the exact same things on an embryo, especially if the woman has to go through IVF anyway. So I think in those particular conditions [childhood-onset genetic disorders] PGD could be appropriate. However, when you start getting into the selection, it becomes more complex and that’s why we set out to engage large numbers of Canadians.’
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. Margaret Somerville demonstrates how religion can bias ethics into strange and irrational territory.
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, is donating unused IVF-created blastocysts, which 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 maleable set of ethical principles is needed.