ABNORMAL

Design4Life

Early images of foetuses in the womb have taken on an enormous significance in today's society. Pregnant women in the UK are 'offered' all available foetal tests, with the national health watchdog organisation charged with ensuring that every foetus is checked in at least 11 different ways. This is despite the fact that these tests take place after the time when women have decided in principle whether or not to continue with their pregnancy i.e. AFTER they have decided that they want to have their baby.

This government policy has the aim of reducing the financial cost to the state of medical and social care for disabled people through the resulting increase in abortions where tests predict a high probability of impairment. Women have widely reported that they have been coerced into taking these tests, including tests that can endanger the foetus if the first tests show a risk of impairment, and that 'counselling' following 'positive' test results has focussed heavily on the desirability of abortion.

Alongside tests, scan images are assessed to decide whether or not the foetus is at risk of impairment. Again, the national health watchdog is charged with ensuring that all scans are given every possible check, and health authorities are penalised if this is not done. In a very real sense, these images are used to help to decide whether a foetus is 'normal', and therefore worthy of life, or 'abnormal' and not. Women are warned not to tell others of their pregnancy until these tests are completed, giving the impression that their foetus is not 'valid' until it has been sanctioned by science.

As I have already written about in Towards a Scientific Model of Disability, this is despite the fact that the tests are rarely definitive; instead, they mostly assess 'risk'. And they cannot tell the extent to which a child will be affected by an impairment, if at all. They also offer the dangerous illusion that having a disabled child is a choice - in reality, most children acquire their impairments at birth or in early childhood rather than in the womb.

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In contrast, the genetic screening of embryos before implantation has brought the ability to parent to women who previously have had to undergo a succession of miscarriages in an effort to have a child, and/or who have lost their children at birth or in early childhood. A very few genetic illnesses are caused by a single lethal gene which is easy to identify and screen out. Women who are desperate to have families, and women whose family experiences have been very badly affected by genetic illness, have welcomed this development with relief.

However, the process is extremely expensive, time-consuming and uncomfortable for women to undergo. As with all forms of IVF, it is also potentially life-threatening. It is also, inevitably, less successful than other forms of IVF, as there are fewer embryos to choose from - sometimes there are no unaffected embryos found at the end of a treatment cycle at all. Women do not, therefore, opt for this process lightly, and many who have the potential to benefit actually decide not to opt for it.

Our belief that scientists are all-powerful has led us to confuse genetic screening with 'designer babies'. We believe that, quite soon, technology will allow us to choose our children's intelligence, appearance, personality and sexual orientation. Since we have many concerns about this, we have decided that scientists - and women - must be tightly regulated in what they are allowed to do. This continues to hamper important research and to restrict women's choices.

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It is clear that the historical legacy of the eugenics movement must have relevance here. In the first half of the twentieth century, mass-sterilisation was advocated by the movement and a surprisingly large number of US States passed laws making this legal. These laws were aimed at just about everyone who was not blonde and blue-eyed, since poverty was believed to be a genetic trait and both these genes and genes for poor character were believed to be characteristic of 'non-Nordic' races.

Inevitably, sterilisation failed to succeed as a mass movement. Selective removal of embryos who carry particular genes before implantation, though, and selective abortion, is clearly a far more acceptable way of doing things - at least in the United Kingdom. Just as the manipulation of women's right to choose to ensure that they make the 'right' choice is a legacy of the eugenics movement, the fears that the human race is about to be redesigned by scientists is part of this legacy too.

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In reality, on the basis of what scientists know today, it will never be possible to 'design' a baby. We cannot even choose whether or not a baby will be disabled, since most impairments are acquired at birth or in early childhood. If we could, though, would we really opt for qualities which offer no guarantee of happiness or success in life? Or would we opt for qualities which in fact any child has the potential to possess, whether they have an impairment or not?

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© Ju Gosling aka ju90 2008

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