Tuesday 27 May 2008

The Independent: Dominic Lawson: We're hiding from the truth: eugenics lives on

[...] The original Human Fertilisation and Embryology Act, under Margaret Thatcher's government in 1990, passed into law the notion that if there was a substantial risk that an unborn child could be "seriously handicapped", then there was no limit on the period during which its life, in utero, could be terminated. And there you have it: such rights as are imputed to all "viable" unborn children are absolutely withdrawn if the child is not ... normal.

There was in fact one amendment to this aspect of the law, which was put to the vote last week. It merely stipulated that when such a diagnosis is made, the mother-to-be should be provided with an-up-to-date analysis of the prospects and treatments available for such a child, and details of help-lines run by organisations such as the Down's Syndrome Association (which represents far and away the most common – and most feared – form of congenital disability).

This amendment was conclusively rejected by MPs, by 309 votes to 173. Not only did the great majority support the notion that a disabled unborn child could be terminated right up until 40 weeks' gestation, they didn't even want there to be a legal requirement that such a decision is based on more than an understandable spasm of panic, or even horror.

Those who opposed this amendment doubtless believed that the disabled associations who might provide such information would be putting pressure on the pregnant woman not to terminate. Yet there is at the moment a tremendous pressure in the opposite direction: because of the significant risks of miscarriage inherent in amniocentesis (the process by which blood for chromosomal tests is taken from the unborn child) doctors almost invariably tell the pregnant woman that they will not perform the test unless she agrees in advance to terminate the pregnancy, if Down's Syndrome is indicated.

This pressure to terminate is psychologically understandable – not least from the doctors' point of view: for every 100 instances of Down's Syndrome detected, about 400 "normal" pregnancies miscarry as a result of the amniocentesis. So if the mother refuses to be swayed by the social and medical pressure to abort her "abnormal" baby, she is making the system look even crazier and more wasteful than it already is.

Not the least crazy aspect of it is that there is actually a waiting list of people who want to adopt a child with Down's Syndrome. The idea that institutionalisation is the only alternative to abortion for such a child, if it is not wanted by his or her biological parents, is hopelessly outdated.

Some years ago, when I wrote about the birth of our own daughter Domenica, who has Down's Syndrome, Claire Rayner commented that we had behaved selfishly, because of the "misery" and cost to society of such children: "People who are not yet parents should ask if they have the right to inflict such burdens on others". There you have the classic eugenic argument, from a very well-known ex-nurse who was frank enough to blurt out what is normally covered up.

While I was discussing this article yesterday morning at home, Domenica, who will be 13 this Sunday – must have overheard. She suddenly said, at lunch, "I'm so glad I'm human." Perhaps I am being an over-proud father, but I think she put her finger on the most important argument of all. Read more
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