Embryo Screening: Blurred boundaries in debate

It’s always important to be prepared to put your views under an internal microscope, to try to sort out which of them you hold out of habit, out of received wisdom from other people, or from genuine conviction. But it is a hard discipline, and if it’s not painful, you’re not doing it right. And of the issues surrounding disability, my views on pre-natal screening and selection are among the ones I find most difficult.

Let me put my cards on the table straightaway. Instinctively, I have a deep-rooted aversion to the idea of a decision-making process, made before birth, which decides who should, and who should not, have a chance of life. It’s not difficult for me to work out where this comes from: it’s a very personal view. My blindness has a genetic basis, albeit not a clearly understood one. It’s conceivable that as the technology develops I could have been “screened out”. But I’ve had a good and happy life; so the idea that it could all have been snuffed out by a scientist in a lab just doing his or her job appals me.

But that, of course, is a subjective, some would say a very selfish view. After all, people will point out, nature and circumstance are screening out viable lives all the time. I always recall a one-liner of the laconic American comedian Steven Wright: “Last night I had a dream; all the kids prevented by the pill came back”.

OK, so we live in a random world, where the possibilities of life are almost infinite and capricious. That doesn’t alter the fact that I feel a chill when I think about someone actually making the decision, based on an ill-defined view of what is a worthwhile life. The problem with this view is that it ignores the effect of disability on everyone other than the child involved.

A month ago, my mum died: much mourned by her two sons. Like most of that wartime generation -she was born in 1920 -she had it pretty tough: the early days of her marriage spent with a husband overseas, a grim spell in the ATS (the women’s section of the army), and then, living in cramped conditions with her parents. When she finally did get a home of her own, she was to discover that both her sons would be totally blind.

She lived to be proud of what my brother and I achieved, but all she could see at the time was few prospects, a life of dependence, and to be frank, a reliance on our parents for the rest of our lives. That’s not how it turned out; but that’s how it looked in the 1940s, to a young couple with no knowledge of what might be possible. It was scary enough to make her decide to terminate a third unplanned pregnancy, convinced she wouldn’t be able to cope with another blind child. In the event, she still had to cope with her two children having to go away to boarding school, and having to grow up struggling to do things other kids took for granted.

The point I’m making is that although I feel all the horror which many disabled people share at a world where we are regarded as dispensable; a world where our exclusion will create a happier, healthier society, oh, and let’s not forget – avoid a great deal of expense! Nonetheless, in that process, am I entitled to ignore the cost to the people who do the real caring; and who have the much harder role of having to watch, rather than being able to get stuck in and sort things out.

I’m still left with my instinctive resistance to pre-selected life, but my mum’s death has made me examine that resistance very closely. People will say: “Ah, but this will never be applied to a condition like yours. It’s intended for only the severest forms of disability”. In fact, it’s exactly because I do believe that once we have the power to do something, we are almost inevitably programmed to take it to extremes, that I think my view is legitimate; but my internal microscope still sees a very blurred picture.

Peter White is a writer and broadcaster

See Is it right to screen embryo’s for disabilities