Diana Wichtel: There'll never be a perfect world

COMMENT

You have to wonder whether the rise of the secular society has something to do with the sort of decisions we're called upon to make these days.

Once, most of the heavy stuff was dealt with for us. God and doctors - it was sometimes difficult to tell the difference - handled matters of life and death.

Now, like Adam and Eve forced to bear the burden of knowledge, we must shoulder responsibility ourselves. Our consent must be relentlessly informed. Lost in a sea of guilt-inducing and conflicting health information, we're supposed to take charge. The happy innocence of ignorance is no longer an option.

And it's only going to get worse. The media are full of increasingly Godlike advances in genetic testing. These are presented as good news and, largely, they are.

In this newspaper lately was the story of a family with a history of a rare type of stomach cancer. After generations of tragedy, genetic screening is saving lives. Hard to see the downside.

But some medical miracles are more problematic. There was no testing for foetal abnormality when I had my first child. No scans either. Boy or girl? The best you could do was have a New Age friend dangle a coin over your tummy. You paid your money and took your chances in Nature's lottery. It was a blissfully anxiety-free pregnancy.

By the time I had my last child, it was high-tech all the way. Amniocentesis was recommended to test for Down's Syndrome and spina bifida. I was due to have the test over the Christmas period so, by the time it finally happened, I was nearly five months pregnant.

I'd seen my baby waving tiny, hopeful limbs on an ultrasound. I could feel it kicking me. As I waited for the results, the idea of doing anything about it (abort the foetus) should there be a problem became unthinkable.

In the end, unable to stand another anxious night, I rang the lab direct and demanded my results. "Healthy female," came the verdict. I've seldom known such joy and relief but I felt cheated of those early months when I didn't dare enjoy being pregnant.

Not everyone is as neurotic as I am about these things, as my family constantly reminds me. Earlier tests were becoming available at that time so, no doubt, there's more choice now. But if I had it to do over, I wouldn't - not that late in pregnancy.

Yet I wouldn't want to see such tests disappear, either. They exist and people must have access to them. What they do about the results must be a matter of personal choice.

But how far do you go? The sci-fi thriller Gattaca was set in the not-too-distant future, in a world where your personal and professional destiny was determined by your DNA.

It seemed a little far-fetched as late as 1997, but now we're increasingly forced to consider the scary implications of widespread genetic screening.

Will insurance companies demand to know your genetic susceptibilities? Will employers screen workers for costly defects? Where, in short, will it all end?

There are activists for the disabled who reject per se the idea that abnormalities should be screened out of the human race. To do so is to devalue the lives of those who are different. Groups such as the Down's Syndrome Association in Britain see parents who choose cosmetic surgery to normalise the appearance of their affected children as "giving in to prejudice and ignorance".

You can see their point. Though I struggle to understand those who feel that fitting a deaf child with a cochlear implant amounts to child abuse. "Many deaf people consider themselves not disabled at all but members of a language minority," says activist for the disabled Dr Tom Shakespeare.

This is where the struggle of medical science to reduce suffering, abnormality and disease collides head on with the desire for people living with disability to be accepted as people, not a problem. Emotions can run high. One internet blog I visited described the use of cochlear implants as "deaf culture genocide".

Yet isn't it the job of a parent to give a child as many tools as possible to get by in the world? If they have the chance to be fluent in both deaf and hearing culture, isn't that a good thing? My vision is shocking without my contact lenses. I can't imagine choosing not to put them on.

Still, behind the resistance to our "make better" culture is a valid anxiety. As we continue the push towards some dream of human perfectibility, from Botox to genetic screening, the fear is that we will become increasingly intolerant of anything less than perfection. The stigmatising of obese people lends credence to that view.

Of course, there never will be a perfect world full of perfect people. Accidents and illness will always be with us. So will the very valuable drive, as old as humankind, to avoid and overcome them.

A glance at the history of the eugenics movement shows what horrors can be committed in the name of improving the human gene pool. If we're no longer able to leave these things to God, neither can we afford to simply leave them to scientists.

There's no going back. But with the GM moratorium about to be lifted, I can't help wondering what sort of tests my daughter will have to go through when she has her first baby.

And whether she'll still have any choice about it.