There’s a very interesting article on the BBC news website at the moment concerning the decision of Jono, a man with Treacher Collins Syndrome, about whether or not to have children of his own. His having the syndrome himself has led to a number of difficulties – but he seems to have got off fairly lightly compared to the way that it affects some:
While some sufferers have problems with hearing and facial features, others can be born unable to breathe.
“I’ve met a girl that needed a tracheotomy and 24-hour care, and another boy had to have his jaw extracted – which means putting a brace on every morning and and twisting it, which breaks the jaw – how can I knowingly put a child through that? I’d feel so guilty.”
The question he’s asking himself is this: is it acceptable for him to take the risk of putting his own child through the condition – especially when it may manifest more severely in that child than it has done in him? Of course, there’s the possibility of PGD: since the mutation can be spotted by means of genetic testing, and since there’s only a 50% chance of the gene being passed on, it ought to be possible to fertilise eggs in vitro and select for implantation only those without the syndrome.
But things aren’t that simple for Jono: he’s aware of the expressivist objection that
“[i]t 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.
“Also, if you make the comparison with ethnicity, which I know is not always helpful, and you want to start doing this to people of colour, then there would be, quite rightly, an outcry. For me, disabled people are part of the rich mix of a diverse society.”
I have to admit that I don’t buy the expressivist objection, for the fairly straightforward reason that some things are just bad – had it been possible to genetically manipulate the embryo-that-would-become-me so that it didn’t get migraines, for example, I’d’ve been better off; and the same thing applies to any condition that a person could reasonably prefer to be without. And had the genetic manipulation meant that I never came to be, and someone rather like me was born instead… well, that’s hardly my problem, since I wouldn’t be there. I don’t think that the racism analogy works, because all else being equal, ethnicity doesn’t make the blindest difference to your quality of life: you need bigots for that. TCS, by contrast, does make a difference (although others’ reactions sometimes won’t help). Nor does diversity carry any weight, I think: again, a world without migraines would be less diverse, but that sort of homogeneity is fine by me – and I think it’s fairly monstrous to suppose that a trait that is likely to have a deleterious impact on a future person’s life is mitigated in any way by an appeal to diversity.
Where he is on stronger ground, though, is in pointing out that PGD is burdensome on his partner:
“She’d have to inject the hormones, have the eggs taken out – it puts her under so much pressure and that frustrates the life out of me because this is my condition.”
That’s an important point: Jono’s reproductive decisions are not just about him, but about his partner, too.
One question that does occur, though, has to do with parenting and what makes a parent. I’ve suggested before that I have a hunch that we tend to fetishise genetic relationships more than they really deserve. So when Jono talks about being a parent or, in the context of parenthood, about his worries concerning passing on a gene, I’m left wondering whether there might be more than one way to be a father. Suppose Jono and Laura chose a sperm donor. And suppose that several embryos are created, and one or two eventually brought to birth using donor sperm. Jono would still have a strong argument for being the father, in that he would do all the things fathers do except contribute DNA – but since it’s some of his DNA that’s at the root of the problem, and since all men on the planet have overwhelmingly similar DNA to begin with, that might be only a tiny difference. Of course, this wouldn’t make the burden on Laura go away – and presumably she wants a child with Jono, rather than with Jono’s genes – but it might make a difference to the selection process: instead of discarding embryos because they carry the TCS gene, the “extras” would be discarded simply because Laura has better things to do than pop out all those children. (Or we could imagine that the insemination is performed informally, using the turkey-baster method, so there aren’t any spares.) Would that make a difference? From a disability perspective, it probably would… except that we might still worry that in having chosen a donor to begin with, Jono and Laura are already discriminating against TCS carriers. They don’t have to discard TCS embryos: it may be enough that they’re willing to take radical steps to avoid having actually to discard them.
It’s a very good article – thought provoking and well worth reading.