10 October 2016
Postgraduate student in Medicine, Health and Public Policy at King's College LondonAppeared in BioNews 872
BBC Two, 5 October 2016
Presented by Sally Phillips
In this documentary, actress Sally Phillips takes us on a thoughtful journey exploring the different facets of the prenatal testing debate from the Down's community perspective.
Following the introduction of non-invasive prenatal testing (NIPT) for Down's syndrome (see BioNews 807), there have been concerns that, if it is offered on the NHS, its uptake will lead to an increase in the number of fetuses with Down's syndrome being terminated. This concern is largely based on reports that 90 percent of women in the UK currently choose to abort following Down's syndrome being detected, and it is expected that more women will undertake NIPT than currently choose diagnostic tests because of the lower risk of miscarriage (although Professor Lyn Chitty, who appears in the documentary, believes that many women will use NIPT as a source of information only, to prepare themselves and their families for a child with Down's syndrome). Another reason for concern is that Iceland, which already offers NIPT, has seen an increased rate of abortion following a positive result for Down's syndrome, which now stands at 100 percent.
Beyond exploring whether others will choose themselves to have a child with Down's syndrome, the larger issue for Phillips is the kind of society we will have in the future, and, more to the point, the kind of society that her 11-year-old son, Olly, who has Down's syndrome, will exist in. A big concern for her is the threat of increasing prejudice as the number of people with Down's syndrome declines – if NIPT does have such an effect.
Phillips interviews a range of people with an interest in Down's syndrome – from pregnant women, doctors, scientists, campaigners and those with the disorder, covering most facets of the debate. She also travels to Iceland to find out more about the impact that the introduction of NIPT has had there. While the documentary has an implicit bias against testing, I thought it did a good job of contextualising the debate and outlining key perspectives on it – namely, choice vs the rights of the Down's community, in a warm and thoughtful way. Given that most of the media coverage so far on this issue has largely been celebrating the introduction of NIPT, I think this documentary was a valuable contribution from the alternative perspective.
Throughout the documentary we meet a number of people with Down's syndrome who are leading very fulfilling and successful lives, such as Liam Bairstow, who is an actor on Coronation Street, and Karen Gaffney, who gave a TEDx talk about Down's syndrome and has swum the English channel. In Iceland we meet Halldora, a woman with Down's syndrome who is speaking out against testing and for her 'right to life'. She is clearly upset by the discussion, which is hard to watch.
Meeting these people was the best thing about the programme for me, as I hadn't heard anyone with Down's syndrome speaking about their lives before. It was very interesting to hear their perspective on the debate, and seeing how independent and successful these people were made the fact that no adults with Down's syndrome were consulted about the nationwide roll-out of prenatal testing all the more shocking.
During the programme we meet Professor Sue Buckley, a leading expert in education and development for young people with Down's syndrome, who tells us that it is possible for 80 percent of those with Down's to learn to read. As such, many people with Down's syndrome will be able to go to a mainstream school, hold jobs and generally go on to lead fairly independent lives. I don't think this information is widely known. I hope that this documentary might help to challenge pre-conceptions the public has about Down's syndrome and perhaps lead them to think more carefully regarding NIPT.
Phillips also meets a woman who chose to have a termination following news that her child would have Down's syndrome. The woman says her choice to terminate rested on her belief that she was doing the best thing for the future child. She voices concerns that they could have been severely disabled, having learnt about a child with Down's syndrome who was unable to sit up aged five. She acknowledges that people with Down's syndrome can live meaningful lives, but she goes on to claim that even the best case scenario still wouldn't have been enough for her to carry on with the pregnancy – her reasons could have been fleshed out a little more, however. How people cope in different ways with caring for a child with Down's syndrome was a concern which I felt wasn't dealt with particularly well in the documentary. Some people's views on this might give a bit more weight to testing – not everyone will be capable of looking after a disabled child.
From the interviews with healthcare professionals, what we hear about the reactions of medical staff towards a positive Down's test, or the birth of a baby with Down's syndrome, was quite shocking at times. There are stories of women being pushed into testing against their will and of terminations being automatically booked. However, this is balanced somewhat by an interview with an Icelandic doctor who describes the 100 percent abortion rate as 'merciless', making it clear that it isn't simply a case of the Down's community against the medical world, but that more sensitivity from medical practitioners would be helpful.
Phillips makes the point well that individuals are more than just their biological characteristics and their potential health problems – and, if we view people in these terms, it's all too easy to ignore what fantastic qualities they might end up having too. This is illustrated wonderfully at the end of the programme by the flash mob Phillips helps organise for the Down's community. Seeing everyone dancing and having fun helped put the NIPT debate and the position of the Down's community in more human terms. As Phillips says on her experience of Down's syndrome, 'I was expecting tragedy but I got comedy.'