Hereditarily-disabled man considers fatherhood

I was reading this story, and it made me stop and consider the morality of bringing a child into this world with a high risk of deformity. In my opinion, this is a very tough moral issue, because the circumstances in which to make the decision vary, and the context is wide. That is not to say it is a grey issue, as there are no grey issues with morality; (in fact the very notion of grey issues is self-contradictory). Either there is no standard for right and wrong, which is philosophically ridiculous, or there is a standard and we only need to look hard enough. But this isn’t to say that a conclusion is easy, or always attainable. That is, it may be impossible to make an “arm-chair” moral decision on someone else’s behalf, because only they might know the full context in which that decision is made. For example, having a baby in itself is inherently neither good nor bad; (nothing is inherently good or bad; good and bad acquire relevance to a rational being). Whether it’s right or wrong to have a baby depends on a lot of factors, and the emotional appeal “because I want it” is not sufficient grounds for any moral decision.

In this particular story, Jono is a man with Treacher Collins condition; no cheek bones – there is a 50% chance his progeny will acquire the same condition. I won’t presume to second-guess whatever decision he and his girlfriend take, but I would like to comment on some of the opinions being offered in this account.

His girlfriend “really wants the child to be [their] child.” The couple want to go through pregnancy together and give birth. I can appreciate this, as much as an unmarried childless man can, but does the joy of this temporary experience outweigh the very real possibility of their child going through their entire life with a deformity? What might the child say in 20 years’ time? Now, I am not saying that parents should sacrifice their desires and values to a child (real or potential); rather, the parents’ rational self-interests must include those of their child, long-term (otherwise the child wouldn’t actually be an interest to them, which is clearly preposterous).

Aside from adoption, one option facing them is IVF with pre-implantation genetic diagnosis (IVF PGD), which means the embryo can be screened before implantation. Naturally, there are objections to this from certain groups, most obviously the religious. But since the ultimate goal in religion is not to ensure the well-being of man, but to serve a fairy-tale character in the sky – and given religion’s irrational and anti-human code of morality, little needs to be said to counter these objections.

More interestingly is the opinion of some disabled groups, for which Ian Macrae speaks: “It re-enforces the stereotypical notion that disability per se is a bad thing that should be excluded and that disabled lives are intrinsically less valuable.” If one’s moral code holds human life as the standard, which Objectivism does, and encourages well-being and flourishing, then disabilities are bad, almost by definition. That’s the ugly truth: most rational people would not be disabled if given the choice, and would change it if they could. But, do not swallow the above quote whole, as it contains a glaring error based on poor philosophy: nothing is intrinsically valuable. Values are literally things we pursue or strive to keep; things gain value to living beings. A disabled person you don’t know is no more or less valuable to you than any other person you don’t know. No human being is intrinsically valuable, because this would imply that values are valuable to some external presence, which doesn’t make sense. Certainly, disabled people value their own lives, as do those that love them; no other validation is required.

If disabilities are an unfortunate but undesirable fact of life, should we not seek to avoid them? What parent, if given the option to guarantee no birth defects or disabilities, wouldn’t take it? I should point out that the desire to avoid disabilities is not driven by some collectivist dream of benefiting a greater good, or perfecting a gene pool (as the Nazis tried), or fear of “wasting” space or resources on the planet; collective values don’t exist. The desire for “best possible” is a personal selfish matter that we all engage in, and which we extend to our children when the time comes (children are a personal selfish value).

Macrae actually goes on to give us an example of this collectivist thinking when he says “for me, disabled people are part of the rich mix of a diverse society.” Is a diverse society with a ‘little bit of everything thrown in’ a good thing? Well, should we import more Blacks, Whites, or Asians if there aren’t enough in a given area? If a given society has no disabled people, should we break a few legs to increase the “diversity”? I don’t mean to be crass, but you see the point. Human beings are remarkably diverse as we are; societies naturally tend to variety anyway when left alone.

Jono has doubts over IVF PGD because “if my parents had chosen to do it, I wouldn’t be here today.” That’s one way of looking at it. Another way is that Jono would be here, but without his condition. And pedantically speaking, if “you” were conceived a millisecond later by another sperm, would “you” still exist? I’m not sure how useful this kind of hypothetical thinking is for making practical life choices.

Jono says “there are all these other amazing people in the world with genetic disorders, I think the world is a better place because they are in it.” Jono is entitled to his opinion, but I’d point out that he is deciding the entire life of his potential child too; whether you like it or not, appearance plays a massive part in our social interactions.  I think chosen personal character traits are the most attractive features of all, but it would be naive to dismiss physical appearance as unimportant. And even if it is for some people, would Jono’s child be one of them?

Jono continues “I’d feel in some way like I’m insulting or disrespecting them, and that’s what I’m struggling with.” I can only offer my opinion, which is: to use your power to avoid unwanted effects on you or someone you love requires no apology. Remember, the standard for morality is human well-being, not disability. Disabled people may or may not be wonderful attractive people, but disability itself is not a goal to be sought, nor should it be the standard by which decisions are judged.

Dr Christine Patch is right when she says that couples should “make the decision that is right for them.” (Bold mine). But then she says “…they may quite rightly see themselves as being able to fulfil a normal valuable role in society…” I wasn’t aware that our value to “society” (whoever that is) was the justification we needed to exist? (But notice the collectivist mindset again; it is so taken for granted.)

I believe IVF PGD (if affordable and available) is the most rational course of action for couples in this situation. It is therefore the morally correct course of action. Religious qualms are irrelevant. Ethical qualms are misplaced. If the option to avoid impairing a child in any way is possible, it should be taken by the parents. If it’s not possible, the parents must surely consider the life they will be giving their child – physically and emotionally – for as long as it lives. I also don’t think parents should second guess their potential offspring by thinking ‘he’ll get over it’, or ‘I dealt with it, so can she’. Having said that, none of us had the choice whether to be born or not; we had to rely on the love and judgments of our parents, for better or worse. “Starting a family should be a romantic and exciting time – and hopefully by the time we are ready to have children, we’ll be able to make our dream a reality.” I hope for Jono and his girlfriend Laura, it works out for the better.


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