5th October 2016 • My Family Our Needs
Actress and writer, Sally Phillips, is fronting a documentary on the impact of a new screening for Down’s syndrome. In the BBC Two programme being shown tonight (5th October) at 9pm, Sally examines this emotionally charged subject and asks what effect the test could have on society.
What is the screening about?
The new screening test for pregnant women is reported to detect Down’s syndrome with 99% accuracy. While some welcome it, others believe the impact it will have on the Down’s syndrome population would be ‘catastrophic’. At present:
- There are no prenatal treatments for Down’s syndrome, except termination.
- Currently 9 out of 10 British women terminate after receiving a positive diagnosis.
- Statistics are disputed, but some argue that in the last ten years, the number of terminations has gone up by 40%.
- Since the Non-Invasive Prenatal Testing has been available in the private sector, terminations have gone up by a third.
This comes at a time when people with Down’s syndrome are living with better health, life expectancy, wellbeing and employment opportunities.
Why Sally?
Sally is a Mum to three boys, all of whom like swimming, cricket, ice-cream and Barcelona football club. Olly, the eldest, also has Down’s syndrome. Sally says, ‘Although Olly was the reason I started making this film, you’ll be relieved to hear it’s not just about him. It’s not just about Down’s syndrome either. It’s a film that asks what kind of society we want to live in and who should be allowed to live in it. If that all sounds a bit heavy, don’t worry there’s also dancing. Oh and just so you know, I’ve never made a documentary before, so…hold onto your hats, people.’
In A World Without Down’s Syndrome? Sally meets people on both sides of the debate and ponders ethical questions around future scientific developments. What will we be able to screen for next? What do our screening choices reveal about us? What do we really value? How inclusive are we really?
As part of the documentary, Sally meets the following advocates for those with Down’s syndrome:
- Professor Sue Buckley, whose pioneering research has enabled thousands of children with Down’s syndrome to be educated alongside their peers.
- Wild swimmer, special Olympian and Down’s syndrome self-advocate, Karen Gaffney.
- Blogger Hayley Goleniowska.
- 32-year-old Halldora, one of the few people in Iceland with Down’s syndrome.
- Liam Bairstow, the 28-year-old actor from Coronation Street.
Sally also meets professionals including:
- Kypros Nicolaides, a world expert on maternal foetal medicine.
- Lyn Chitty, the only professor of genetics and foetal medicine in the UK.
- Jane Fisher who runs a charity supporting women through pre-testing and diagnosis, as well as a woman who chose to terminate her pregnancy.
Why do the documentary now?
Pre-natal genetic screening is predicted to become routine for pregnant women. Also, the Government is making important decisions about the Down’s Syndrome Screening Pathway. Plus, the Nuffield Council for Bioethics is debating this very issue.
Put all this together and A World Without Down’s Syndrome? wants to bring these difficult questions into the public arena. So we can all be part of the debates that shape our society’s future.
With so many different opinions, the programme may be tough to watch. But it’s a topic which needs to be talked about and, since October is Down’s syndrome Awareness Month, the timing is perfect. Watch it on 5th October 2016 at 9pm on BBC Two. After then, it may be available on the iPlayer.
Look out for more features from My Family, Our Needs for Down’s syndrome Awareness Month. Follow the hashtags #DSAM2016 and #worldwithoutdowns to have your say.