Dominic Lawson: Don't 'cure' Down's children

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The Independent Online

Out of America there is always something new. The latest example of that country's unparalleled contribution to medical progress is the announcement by the University of Washington that its scientists had succeeded in removing the extra copy of chromosome 21 in cell cultures derived from a person with Down's Syndrome. It is clear that this breakthrough has startling potential for addressing a condition which is far and away the commonest form of congenital disability.

For parents of children with the condition (and I am one) this news inevitably raises the question: what does it mean to have "a cure" for Down's? And, more difficult: would we even want our children to be – for want of a better word – normalised? There is, of course, an existing so-called treatment of the condition: elimination by abortion. Gene therapy, however, would be a genuine attempt at treatment and cure; but also colossally complex, at the outer fringes of the feasible. Most genetic conditions now being worked on by scientists tend to be those caused by a single gene, usually one mutation at one amino acid.

Yet imagine if someone at Washington or Johns Hopkins really did discover a way of therapeutically removing all the extra genetic information within the 21st chromosome that causes the mental disability within the person with Down's: would this be an unmitigated blessing for either the child or its parents?

You might think so; but in a recent survey of Canadian parents with Down's Syndrome children, 27per cent said that if there were "a cure" for their offspring's condition they would not use it: and a further 32 per cent said they were unsure if they would take advantage of it. This result was described as "surprising" by the New York Times; but it is not surprising at all. My younger daughter, who has the condition, is what she is; and that is the person her parents and sister know and love. If she were genetically re-engineered, would she be the same person? She would certainly be very different; with the ability to count or read a clock, possibly even to penetrate the secrets of calculus: but those are not the sort of attributes which define what we love in those to whom we are closest.

In all this, it is important to bear in mind that Down's Syndrome is not a disease: neither, despite the lazy shorthand of some commentary, do people "suffer" from Down's Syndrome. It is true that people with disabilities can often be teased or bullied, and this certainly causes suffering to the victim: but it is perverse to assert the appropriate treatment for this form of suffering is that the stigmatised rather than the stigmatisers are the people who should be made to change their fundamental identity.

None of this is meant as a criticism of the attempts by American scientists to find a treatment for Down's Syndrome. Nonetheless, just as Americans tend to overuse anti-depressants, they seem to have a national tendency to want to change anything that does not seem perfect. That is a mighty force for progress: but it is not the secret of life.