Our humanity put to the test: Brian Wilson questions medical wisdom on pre-natal screening for all birth defects

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The Independent Online
'THE RESEARCHERS have costed their screening method and estimate that it costs pounds 38,000 to avoid one Down's baby. The lifetime costs of caring for one Down's child have been estimated at pounds 120,000.' So, I thought, ethnic cleansing is not the only dubious moral concept staging a comeback in the last decade of the 20th century.

Perhaps this was an over-emotional response. Perhaps I should have looked my 18-month-old son reproachfully in the eye, and thought: 'Eion my boy, do you realise that you represent an avoidable net expenditure to British society of pounds 82,000? Careless of us, really. If only Bart's had let us know.'

The research in question comes from that hospital - St Bartholomew's, London - and Professor Nick Wald and his colleagues. To their chilling cost-benefit analysis, in the British Medical Journal last month, they added: 'The most important reason for screening, however, is not financial. It is the avoidance of handicap and of distress to the families concerned.'

Oh well, that's all right then. The money is, of course, an important consideration in our impoverished society, but the real problems are 'handicap' - that's you, Eoin, - and 'distress', which in the view of Professor Wald and his colleagues is the side-effect inevitably visited upon anyone who fails to avoid the birth of a child with Down's Syndrome.

Let me define my position. I have no moral axe to grind. I am not against screening. I support choice. I have absolutely no interest in pushing my own views or our own positive experiences down anyone else's throat. The decision about whether to proceed with a pregnancy is deeply personal, and there are enough zealots marching around telling women what they should or should not do without me joining in.

But I cannot accept an ethos where it is assumed that it is an undisputed social good for Down's Syndrome babies to be detected in the womb, only in order that they may be more efficiently disposed of.

Among the names of Professor Wald's colleagues was that of Dr Howard Cuckle, which reminded me of an edition of the Yorkshire Television programme The Time, The Place, which I saw recently, on the subject of 'abnormality'. The gist of Dr Cuckle's message on that programme was that pounds 88 would buy a DIY kit that would help the expectant mother to determine the odds against giving birth to a child with Down's Syndrome.

This particular scientific wonder had been developed at St James's Hospital in Leeds - like St Bart's, an opted-out establishment with a commercial interest in promoting its activities. The programme did not make it clear that, unlike amniocentesis, this and similar tests are far from conclusive: 'an expensive way of causing extreme anxiety to every pregnant woman', according to a critic in the British Medical Journal.

Down's Syndrome babies account for six births in every 10,000. If money is the argument, how much of it should be spent to get that figure down to five, or four, or three? Might it not be better to put the same commitment into ensuring a decent life for the small number of children who will be born with the condition? In this mean-minded society, that never seems to be the issue. While the researchers at St Bart's refine their 'Triple Test', what comparable brain power is providing an integrated, high-quality support system for the 600 or so Down's babies born each year? In our experience, very little. All the professionals who have helped us are superb. But the framework in which they operate, and the expectations which govern it, leave a lot to be desired, and don't stand international comparison.

I had never given any of this much thought until Eion was born. Of course there was a sense of shock, and of course there was self-doubt about our ability to cope. But these reactions are a far cry from the presumption of 'distress' or rejection of 'handicap'. In so far as our apprehension persists, it has less to do with the fact that our son was born with Down's Syndrome than with the way our society deals with that condition. Well-meaning people are always telling us how things have advanced, and how much can be done for these children nowadays. But that is primarily a reflection of just how recently the Dark Ages existed.

In countries such as Holland and Australia, the buzz words are 'early intervention', meaning an individual programme of support and development from the first days of life. There is no comparable philosophy in this country: wherever one turns resources are scarce, and that, in the present climate, is unlikely to change.

The more common it becomes to test for abnormality, the more pressure will be put on women to 'find out' whether the child they are carrying is 'normal' in every respect, then to conform with the assumptions that appear to underlie that process. Why stop at Down's Syndrome? There are many other conditions which are 'distressing' (at least transiently) for parents and certainly expensive for society.

If ever-increasingly sophisticated tests become the norm, surely the least that should accompany them is a comprehensive system of counselling, from the point where 'distressing' results emerge. I believe that the language surrounding these questions becomes self-fulfilling. If the received wisdom is that the birth of an 'abnormal' child produces 'distress' that can, through the wonders of medical science, be 'prevented', it is hardly surprising that people who find they have slipped through this net, react with fear.

The decision on whether or not to promote more screening to detect - and perhaps eliminate - 'abnormality' is too important to be left to doctors; particularly to doctors who believe that the difference between pounds 38,000 and pounds 120,000 should be a significant factor in that calculation.

The author is Labour MP for Cunninghame North.

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