A World Without Down’s Syndrome?

90% of people in the UK who are told their child will be born with Down’s syndrome choose to have an abortion. There are concerns that a new, highly accurate test to identify babies with the condition, will lead to even more terminations. BBC2 will screen a documentary tonight entitled ‘A World Without Down’s Syndrome?‘ about the ethics of pregnancy screening.

Fronted by comedian and actor Sally Phillips – best known for her roles as Tilly in ‘Miranda’, Shazzer in ‘Bridget Jones’ and for co-creating and writing the award-winning sitcom ‘Smack The Pony’ – the documentary explores family life with a child with Down’s syndrome. Sally has three sons and Olly, her eldest (aged 12) was diagnosed with Down’s when he was 10 days old.

Initial screening tests for Down’s are non-invasive and are offered to all pregnant women in the UK (except Northern Ireland). They consist of an ultrasound scan and a blood test and are not diagnostic and so cannot give a yes or no answer. Instead, they help to identify women whose chance of having a baby with the syndrome is greater than 1 in 150. If you find yourself in the high risk category, further tests can be done later in pregnancy, but as these tests are invasive they come hand in hand with a risk of miscarriage.

In January this year, it was announced that the NHS would be offering a Non-Invasive Pre-Natal Test (NIPT) which is said to detect Down’s Syndrome in pregnancies with 99% accuracy. This is brilliant news, as with the new test there is no risk of miscarriage and the results are far more accurate. The BBC2 documentary follows Sally Phillips as she explores what effect the test could have on our society, drawing not only from her first-hand experience but also by meeting several families who give an insight into their experiences of having a child with Down’s syndrome, as well as people with Down’s syndrome themselves.

At the moment, nine out of ten British women terminate after being given a positive diagnosis for Down’s syndrome and Phillips thinks that’s largely because there is a lack of understanding about what living with Down’s Syndrome actually means. Since the NIPT became available privately in the UK, terminations have gone up by a third. The rolling out of the test on the NHS to women whose babies are at high risk of Down’s means there’s a distinct possibility that, in the near future, the only children born with the condition are those whose parents have explicitly chosen that fate. ‘And that has ethical implications,’ says Phillips, ‘as to whether the government supports [the costs of raising a person with Down’s] or not because it’s kind of: “it’s your bed, lie in it.”’

As an older mum (I gave birth at the age of 41) I was heavily pressured into testing for Downs and going through a ‘consultant led pregnancy’ because of my age – I was considered to have a high risk pregnancy. I refused on all counts as I was more concerned with the risks the tests would have on my unborn child – I didn’t want to miscarry and to me that was more important. Whether the child I was carrying had a disability was of less concern. I wanted to go through my pregnancy whatever the outcome.

My cirumstances as an older mum however did predetermine that decision. I’d tried to get pregant from my mid thirties but was unable to and had resigned myself to the fate of never becoming a parent. So when I did eventually succeed, nothing was going to stop me having that child. If I could go back in time and go through the experience again as a younger mum to be, I wonder how I would’ve reacted to the same experience. Would I have been able to make such an informed choice not to screen for Down’s and dismiss the doom and gloom opinions and outlook offered by the medical profession?

The new NIPT test is less invasive – it’s just a blood test – and so I think it’s a great step forward in that respect, but will that mean a great step backwards with regards to diversity and acceptance within our society. It’s shocking to know that it is still legal in the UK for a foetus with a disability to be terminated right up until the moment when labour starts and that disabled babies in the Netherlands can be killed with a lethal injection after birth under the ‘Groningen Protocol’. The BBC is also tackling the topic tonight in todays braodcast of The Moral Maze and I’ll be tuning into that as well.

I agree with Sally, that a debate needs to be had and that it needs to be inclusive. It’s down to offering parents a choice and a more informed one at that. If this test becomes available on the NHS I do think the percentage of terminations may rise, but on the flipside the test will also reduce the need for invasive testing procedures, which trigger around 350 cases of miscarriage every year. If parents decide to proceed with a pregnancy after diagnosis, our society needs to offer acceptance and support. In Sally Phillips words… “If we deny someone the chance to be born because we’ve decided they won’t meet some predetermined measure of status or achievement, then we’ve failed to grasp what it means to be human.”

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