Sally Phillips explores the impact of a new screening for Down’s Syndrome in BBC Two's A World Without Down’s Syndrome?
This is 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. Sally Phillips
Following the announcement that a new screening test is said to detect Down’s Syndrome in pregnancies with 99 percent accuracy, Sally examines this emotionally charged subject and asks what effect the test could have on our society.
While some welcome this test, others believe it will have a catastrophic impact on the Down’s Syndrome population. There are no prenatal treatments for Down’s Syndrome except termination and 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 percent and since the NIPT has been available in the private sector, terminations have gone up by a third.
This comes at a stage when for the first time in history people with Down’s Syndrome can expect better health, life expectancy, wellbeing and employment opportunities.
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 key players on both sides of this emotionally charged debate and ponders some of the ethical questions around future scientific developments. What we will be able to screen for next and what do our screening choices reveal about us, and what we really value? How inclusive are we really?
Sally meets advocates for those with Down’s Syndrome including Professor Sue Buckley, whose pioneering research has enabled thousands of children with Down’s syndrome around the world 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 who is one of the few people in Iceland with Down’s Syndrome; and Liam Bairstow, the 28-year-old actor from ‘Coronation Street’.
To discover more about screening Sally meets professionals including Kypros Nicolaides, a world expert on maternal fetal medicine; Lyn Chitty, the only professor of genetics and foetal medicine in the UK and Jane Fisher who runs a charity supporting women through pre-testing and diagnosis as well as a women who chose to terminate.
At a time when where pre-natal genetic screening is predicted to become routine, the Government is making important decisions about the Down’s Syndrome Screening Pathway and the Nuffield Council for Bioethics are debating this very issue, this documentary hopes to bring these difficult questions into the public arena so we can all be part of the debates that shape our society’s future.
The one hour documentary is presented and co-written by Sally Phillips and is produced by Dragonfly, part of Endemol Shine Group. The Executive Producer is Emma Loach and the Producer/Director is Clare Richards. It was commissioned by Maxine Watson, Commissioning Editor, Documentaries.