Church of England report seeks neutral approach to new Down’s syndrome test

19 January 2018

BBC

Sally Phillips with Halldóra, one of the few people in Iceland with Down’s syndrome

Sally Phillips with Halldóra, one of the few people in Iceland with Down’s syndrome

A NEW pre-natal test for Down’s syndrome is “good news” but could have the “unintended consequence” of a further rise in the termination of pregnancies, placing the very existence of people with Down’s syndrome in question, the Church of England’s Mission and Public Affairs Council said this week.

A motion to be debated by the General Synod next month both affirms the value of people with Down’s syndrome and welcomes the development of screening techniques that, when introduced universally in other countries, have resulted in almost 100-per-cent termination rates. The testing is “not intrinsically problematic”, an accompanying background paper says, “but the manner in which it is introduced, understood and administered has the potential to lead to major reductions of Down’s syndrome live births.”

It notes that in countries such as Iceland and Denmark, which have almost universal screening, and almost 100-per-cent termination rates, “there is a real possibility that people with Down’s syndrome will effectively disappear”. The post-screening abortion rate in the UK is currently 90 per cent. “The place within society of people with Down’s syndrome and even their possible future existence are now under question,” the paper warns.

At a press briefing last Friday, the Church’s national adviser on medical ethics, the Revd Dr Brendan McCarthy, welcomed the test, and contended that better, up-to-date information could prevent a replication of Iceland’s and Denmark’s experiences.

“In terms of valuing people with Down’s syndrome, it is difficult to say that we value you, and we will continue to value you, if people like you disappear completely,” he said. “That is a difficult thing to hold together. While it is obviously always a woman’s choice . . . our hope is that, with full information . . . provided in the ways that we have been mentioning, significant numbers of women will choose to continue with their pregnancy.”

Non-invasive pre-natal testing (NIPT) is due to be offered this year on the NHS to about 10,000 women who are at higher risk of a having a child with Down’s syndrome. Currently, about 7900 women a year opt to have an invasive test, of which 46 miscarry. More than 2000 choose not to have the test. The paper notes that NIPT offers “many advantages: it is safe, it will result in decreased incidence of miscarriage, and it provides women with important information.”

NIPT was “good news”, Dr McCarthy said, as was the “enormous progress” made in the lives of people with Down’s syndrome. The potential for an increase in terminations was an example of “unintended consequences” or “waves of interference”. The Church wanted to make sure that women’s choices were “genuinely free and genuinely informed”, which meant “full and comprehensive information” about screening, and Down’s syndrome, delivered in a “neutral way”.

There was anecdotal evidence, he said, of the delivery of a positive Down’s-syndrome test result with the phrase “I’m sorry, I’ve got bad news for you,” followed by the offer of a termination. This was contrary to best-practice advice. He also expressed concern about the fact that women in Iceland were “strongly encouraged” to take the test. Women “ought not to be placed under implicit or explicit pressure to undergo NIPT”, the paper says.

When he was asked about the development of further tests, Dr McCarthy said: “There is a lot of talk about possible tests that could be done in terms of gene-editing, children for the future. A lot of that currently lies in the realm of science fiction rather than science fact. I don’t think there is going to be a plethora of these sorts of tests coming down the line any time soon.”

In answer to a further question, he said: “I would find it difficult to say that there will come a point when information is a bad thing. I think information and choice are always good things. I think the context in which the information is given, and the environment in which the choices are fashioned are the things that we would want to concentrate on.”

The Church of England was “not in the business of judging”, he said. “It’s not in the business of telling women what to do. . . I certainly wouldn’t want to give the impression that anyone who’s given a diagnosis of foetal disability is facing a situation that isn’t difficult. . . Whatever choice women make, we want to make sure the choice is fully informed and is genuinely free.”

He raised concerns about access to NIPT in the commercial sphere, outside regulatory oversight, mentioning that a search on Google had immediately brought up 12 facilities offering a result in exchange for a blood sample and between £650 and £1300.

The background paper emphasises that people with Down’s syndrome have “as much to give and share as anyone”, and argues that the shift in attitude towards them “has started to reflect the theological insight that we are all equally human before God”. It observes “major improvements” that have enabled adults with Down’s syndrome to live independent or semi-independent lives, but says that many people remain unaware of progress, “relying on outdated or inaccurate information”. Inclusion within the Church has “a long way to go”, it says.

About 750 children with Down’s syndrome are born every year, and current life-expectancy is about 60, compared with 12 in 1946. In 2010, there were 482 terminations in the UK because of Down’s syndrome, rising to 786 in 2016, despite a decrease of 6000 in the number of all terminations.

The Synod motion follows a BBC documentary by the actress and comedian Sally Phillips, which included a visit to Iceland (News, 9 June). Dr McCarthy said that, while people with Down’s syndrome and their families had not had “direct input” into the motion, or the paper, groups, including Mencap, had been consulted, as had Ms Phillips.

 

‘Inclusion does not necessarily mean appreciation’

The Vicar of St Richard of Chi­ches­­ter, Langney, the Revd Timothy Ezat, talks about his daughter:

TIMOTHY EZATFr Timothy with LeevaMy daughter, Leeva, will be eight in February. She goes to a special school, and is a jolly child who is up for laughter, very sensitive, and clever in her own way. She is observant, and loves music and reading books. She probably thinks that heaven is one big swimming pool. We only discovered that she had Down’s syndrome when she was born. I immediately noticed that there was something, but it took a few days for it to be confirmed by a doctor. I remember reading one leaflet that said that having a child with Down’s syndrome might feel like preparing for a holiday in the Caribbean, but being surprised to be going to Holland. My wife found that positive, but I found it negative.

At first, I did not want to be treated as if we had special questions, or to go to things only for the parents of children with Down’s syndrome. In terms of the new test, it seems that that it has an inclination towards encouragement to abort your baby. This is not communicated, but there is the fact that this is why it is being done. It’s not something that I am comfortable with — whether as a Christian or as a human being, I don’t know.

The motion seems to be thinking along the right lines, but I need some time to think it through and digest it. In terms of the Church, I think that ignorance remains. Older people have said to us “We are so sorry for you.” But I think that is generational. We have also come across people who think that Down’s syndrome is not from God, and that we should pray for healing. When our daughter was baptised, our vicar got letters saying that it was very wrong to consider her a Christian before she could make that decision. It’s made me think a lot about the way in which we understand salvation, and whether salvation is attended by, and located in, our mental faculty.

On the positive side, people want to include those with Down’s syndrome, but inclusion does not necessarily mean appreciation, being listened to, or taken seriously. I think training should be run by dioceses, helping those who work with children to understand how they could make space for someone with Down’s syndrome. For instance, if you are teaching about the cross, there is sign language you can use.

Sometimes, children with Down’s syndrome sit with their parents at church, because Sunday-school teachers don’t know how to include them. Leeva doesn’t have friends of her age, and I can see children in the playground looking puzzled. There are story books that would help them to understand. My daughter can do much more than is expected: she is up for a challenge.

People with Down’s syndrome challenge whatever measurement we set up as “the norm”, and I think that’s a God-given thing. How do we measure “success”? In the Health Service, it would be good if parents who receive a diagnosis could be matched up with parents of children with Down’s syndrome. Information on paper is very different from seeing people and interacting with them. We also need to be realistic that there are challenges: in many ways, my daughter is still a toddler, and at times that is tiring. We don’t want to leave Leeva with people that don’t know her.

This debate cannot be treated in isolation: it’s part of everything else that happens in a society that encourages individualism, and false notions of freedom void of commitment, challenges, and suffering. It is often looked at as an economic problem, with discussions about the burden on society. We do worry about what would happen if we couldn’t look after her, and I don’t think that we can rely on the Church. This will never be addressed by institutions, but by communities. This, as well as funding, would need wider support from authorities, local and national.

 

‘Welcoming, not screening out’ - The Synod debate on the Down’s test could send a powerful message, says Simon Reader

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