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Documentary review: 'A world without Down's syndrome?'

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A compelling documentary about Down’s syndrome was aired last night on BBC 2. Actress Sally Phillips, best known for her roles in Bridget Jones and Miranda, presented her first documentary.

'A world without Down’s syndrome?' was prompted by a new non-invasive prenatal testing (NIPT), which can detect the condition in unborn babies, proposed for the NHS.

In the documentary, Sally Phillips explored how Down’s syndrome could be completely eliminated from our society, because of NIPT. She highlighted the current statistics - that 9 out of 10 mothers who receive a Down’s syndrome diagnosis choose to abort their baby. This is currently legal right up until birth, because Down’s syndrome is classed as a severe disability.

'What kind of society do we want to live in?'

"It’s not just a film about [my son], it’s not just about down’s syndrome either."

Sally Phillips opened the documentary saying,

"It’s a film that asks the question - what kind of society do we want to live in, and who do we think should be allowed to live in it?" and throughout, sought to lighten the severity of the issues raised.

Negative medical attitudes

One of the main issues that Sally Phillips highlighted was the overwhelmingly negative attitudes that medical professionals have towards Down’s syndrome births. She explained how troubling the information, that parents are given after they receive the diagnosis for their unborn baby, can be.

She read an NHS leaflet on Down’s syndrome, which lists all the potential problems the children can have, whether with heart, gut, hearing, vision, or thyroid.

"I think that just makes you frightened," said Sally Phillips."A medical description will only list all the possible things that could go wrong. And, it’s not then compared with the list of all the possible things that could go wrong with a typical person."

'A burden that is going to last for a long time'

"Of course, I have a biased opinion because I have a child with Down’s syndrome who I love more than life. But my big question at the beginning of this is – what’s so very dreadful to the world about Down’s syndrome?" asked Sally Phillips.

She interviewed Professor Kypros Nicolaides, a foetal medicine expert from the Fetal Medicine Centre, who has been developing screening tests over the last two decades. He answered her question by saying:

"They live for very many years, so if we think of [Down’s syndrome] as a burden to the family or to the society, it is a burden that is going to last for a long time."

But, unlike Professor Nicolaides, Sally Phillips doesn’t see the Down’s syndrome community as a ‘burden’. She advocated that screening is a diversity issue, "To me, Down’s syndrome is a type of person".

Screening lets parents 'make a choice'

Dr Lyn Chitty, from Great Ormond Street Hospital for Children, who is developing the new NIPT, explained that this new test gives women an ‘option’. 

"I do not think we are screening out... On the contrary. I really do not think we’re going to be screening out Down’s syndrome."

Professor Chitty asked Sally Phillips how she felt about her son, Olly, outliving her. Her response was:

"The answer to that is not termination. The answer to that is - if we have a society that is unable to care for people, then the problem is not the person."

Throughout the documentary, medics clung to the idea that screening merely allows parents to make a ‘choice’. However, Sally Phillips’ trip to Iceland, showed what these sort of ‘choices’ can lead to.

In Iceland nearly everyone screens for Down’s syndrome. Over the past 5 years, 100% of babies that tested positive for Down’s syndrome were aborted. That society has decided that Down’s people do not have a right to life. The emergence of NIPT may well result in the UK going the same way.

However, there are two campaigns fighting back against these results in the UK. Don’t Screen Us Out highlights the concerns of NIPT, and urges people to encourage their MPs to oppose cfDNA. We’re All Equal is defending the lives of unborn babies with disabilities, by raising awareness of Lord Shinkwin’s Abortion (Disability Equality) Bill to protect these children from being aborted.