This piece is cross posted from The Independent in the UK with additional reporting from ProLife NZ.
Down Syndrome (DS) is back in the news again with a discussion which was broadcast on ITV’s This Morning last week.
I think there are some big issues here which I will return to in a moment – however I need a moment’s indulgence to address a couple of errors of fact in the piece, which are unfortunately trotted out on every discussion about Down Syndrome.
Firstly that there are degrees of severity of the condition – there aren’t , you either have it or you don’t, it’s an extra copy of chromosome 21, differences in people who have Down Syndrome are the same as the differences in all of us, ones inherited from our parents.
Many talk of the ‘fact’ more parents of children with Down Syndrome separate – quoting a staggering figure of ‘50-70%’, in fact the opposite is true, Urbano and Hodapp (2006 & 2007)showed that parents of children with Down Syndrome actually had slightly lower incidence of divorce than parents of children without a disability.
The crux of the debate on This Morning was whether it was ‘right’ to terminate a pregnancy after IVF when the woman received a positive (or high chance) of Down Syndrome. At this point we wander into a maelstrom of issues and judgements; concern about abortion, views on older women accessing IVF, opinions on whether older parents can look after a child (and often people with DS are wrongly seen as ‘eternal children’), healthcare provision…I could go on.
Since the New Labour White Paper in 2003 ‘Our Inheritance, Our Future – realising the potential of genetics in the NHS’ changed policy so that all women (previously it was only those over 35) were offered screening for Down Syndrome, the message around screening has changed to one whereby it is a condition deemed so serious that it needs a national screening programme to deal with it. Given there is no treatment for Down Syndrome then this is, by definition, a programme to screen out. As a country we don’t screen for other conditions – Cystic Fibrosis for example could reduce life expectancy by 50 years but isn’t screened for, neither are Patau or Edwards syndrome.
Over the last few years life expectancy for people with DS has increased from 25 in 1983 to 60 today (National Down Syndrome Society USA). Medical advances have meant that early intervention, especially over heart defects, has made significant improvements. With positive change in educational inclusion and the end of institutionalisation, quality of life has improved significantly. I would in no way suggest these advances are perfect, however a national screening programme for Down Syndrome is a disproportionate response to the human race’s most common syndrome.
Often women who are presented with a high ‘risk’ of Down Syndrome, (it is often called a ‘risk’ not a ‘chance’) are on track to an almost inevitable termination. Society’s stereotypes of people with DS and its antipathy towards inclusion of those with learning difficulties in the workplace or socially (nine out of ten people have never invited a person with disabilities into their home for a social occasion) just pile on anxiety. 91% of positive diagnoses lead to terminations.
A society already struggling with a lack of faith in the human ability to change things, to successfully manage relationships and everyday life, is also likely to find it hard to cope with the perceived ‘risks’ of having a child with Down Syndrome. It’s likely to conjure up a cascade of resultant personal risks too; the risk of splitting up over the child, of being trapped, of failing to provide for the child properly, of not coping.
We’re now on the cusp of new, early, and more accurate blood tests in pregnancy for Down Syndrome. These tests, currently being rolled out in the US have even prompted some doctors, such as Brian Skotko (Massachusetts General Hospital) to ask if babies being born with Down Syndrome will disappear entirely. These tests will also have potential for many other chromosomal and genetic disorders – there needs to be an open public debate about what these disorders really mean for those who have them.
Public health screening with the express intent to remove people with Down syndrome from the population is divisive and a disproportionate response to potential quality of life. It also serves to exaggerate health problems and risks.
The history of the twentieth century is filled with examples of how people have been dehumanised and excluded; from pseudo-scientific IQ testing to extermination and institutionalisation. Today we have the chance to build something better. The challenge for society is to appreciate that differences are not deficits – a society that appreciates the talents and differences of everyone, is a society that can be truly both enlightened and progressive, focussing on what each and every one of us has the potential to achieve.