A world without Down's syndrome?

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Alexandra Tompson, Legal Analyst and Veritas Scholar at ADF International, reflects on the issue of Down's syndrome screening.

"'Rabbi, who sinned, this man or his parents, that he was born blind?' Jesus answered, 'It was not that this man sinned, or his parents, but that the works of God might be displayed in him.'" (John 9:2-3)

"But God chose what is foolish in the world to shame the wise; God chose what is weak in the world to shame the strong; God chose what is low and despised in the world, even things that are not, to bring to nothing things that are, so that no human being might boast in the presence of God." (1 Corinthians 1:27-29)

You have probably come across Sally Philips' documentary "A World Without Down Syndrome?" aired on the BBC last week. If not you may have at least caught a glimpse of the intense debate which it has prompted around screening and abortion. Philips discusses the new non-invasive prenatal test ("NIPT") offered on the NHS that will give expectant mothers a 99% indication of the Down's status of their unborn baby. Whilst many have praised her courage, others have accused the British actress of being anti-choice, using her son Olly with Down's syndrome to make mums-to-be feel guilty over abortion, being too emotional, and even too personal.

The prevailing counter-argument is "informed choice". To some there is logic to this. But it stands sharply at odds with the biblical worldview that all human beings have dignity and value due to their creation in God's image (Genesis 1:26). That dignity and value is not confined to gender (both men and women are equally made in God's image) and nor is it denied to those who experience disabilities in this life (whether mental or physical). Jesus Himself was very realistic about the impact of sin and suffering in the world but powerfully affirmed the value of every single person. Indeed, in the passage from John above, we see Jesus explaining that the disabled are not responsible for their disabilities and that God can powerfully work through them to His glory.

What is the NIPT?

The NIPT is a new type of genetic test that can potentially detect a range of genetic (chromosomal) conditions, microdeletions and duplications in an unborn child by analysing the blood of the pregnant mother. It has a detection rate of 99% and testing can be done any time after 10 weeks. It is a safer and more accurate method of screening for Down syndrome than the current invasive amniocentesis test, which carries a one-in-100 risk of miscarriage.

This year, the UK's National Screening Committee recommended that the new non-invasive test become widely available through the NHS. Already in the UK, 90% of mothers terminate following diagnosis. In Denmark the rate is 98%, with a government objective of zero Down's syndrome births by 2020. Since the introduction of NIPT in Iceland there has been a 100% termination rate.

What is Down Syndrome?

About 750 babies are born each year with Down's syndrome in the UK, and there are an estimated 40,000 people living with the condition. Humans normally have 46 chromosomes in each cell, divided into 23 pairs. People with Down's syndrome have an extra copy of chromosome 21. Down's syndrome is a variable condition and the prognosis during pregnancy remains unclear. One child may graduate from college while another may have difficulty expressing himself/herself verbally. Some are more prone to serious health conditions (especially heart and thyroid problems).This means that the NIPT can detect, with reasonable accuracy, if a fetus has Down's syndrome but not how this will impact his or her life. There is scientific consensus that environmental factors (education, lifestyle, a loving and supporting environment, etc.) greatly influence an individual's health and well-being.

What is the problem?

UK Professor of Genetics and Fetal Medicine, Lynn Chitty argues against the use of the wording 'screen out', insisting that the main objective of NIPT is to provide women with information and choice. I agree that women should be given available information about their unborn baby's health. Screening itself is not the problem. It's the screening out that makes me feel uncomfortable and given the statistics there is no denying that the use has become eugenic. Medical experts in the field told Sally Philips that "for some… having a baby with Down's syndrome is an intolerable event because they live for many years", and that this is "a burden that lasts for a long time". If such experts' views are at all representative of society at large, it's frightening. The Biblical stance is to care for the weak and vulnerable (see e.g. Isaiah 1:17), but this core value is being eroded to the point that our society is shifting to a position where it's positively virtuous, even dutiful, to end the life of a baby with Down's syndrome. Parents and society are no longer expected to take care of the weak. We simply eliminate them.

Three False Assumptions

Parents of children with Down's syndrome have a difficult job of making their case heard. It is virtually impossible for them to make a point without those on the other side labelling their arguments as emotional and personal rather than logical. Below are the three main (false) assumptions made in the decision to grant permission for the NIPT:

1) Down's Syndrome is a "serious" condition causing severe suffering

The effective legal position in the UK is that anyone can abort a child up to 24 weeks, but a child with Down's syndrome can be aborted right up to birth since it is classed as a severe disability. This was vividly documented in Sally Philips' documentary, with a lady called Katie. She terminated at 26 weeks, saying she did it out of compassion.

The irony is that all this focus on screening is happening when people with Down's syndrome are achieving more than ever before. Years ago, people with Down's syndrome were housed in institutions. Today, they attend school, work, vote and have meaningful relationships. Their life expectancy has also increased dramatically, from 25 in 1983 to 60 today. Arguably the promotion of NIPT leads to a disproportionate stigmatisation of people with Down's syndrome compared to the reality of their disability. As many parents can witness, public and medical opinions do not reflect the positive reality of life with Down's syndrome. God can, and frequently does, work powerfully through those with Down's syndrome and other disabilities – He is a specialist in using "what is foolish in the world to shame the wise" (1 Corinthians 1:27).

Crucially, people with Down's syndrome themselves refute the assumption that their condition constitutes suffering. What is often missed in this debate is that the vulnerable group, the people actually concerned, haven't been afforded a voice at all.

2) Choice overrides discrimination

The formal purpose of prenatal genetic testing is to facilitate so-called "reproductive choice". But if the disabled have an equal dignity and value to the non-disabled (as seen in the biblical passages above) then the question of choice is irrelevant. Rather, the fundamental question is how such clear and obvious discrimination against people equally made in the image of God can be justified? As Lord Shinkwin (himself disabled) explained in his recent Private Members Bill:

'… [this] concerns an area where, unbelievably, the diagnosis of disability carries a death sentence. Partly because of your Lordships' House, discrimination on the grounds of disability after birth is outlawed. Yet today legal and lethal discrimination on the grounds of disability is allowed up to birth by law. It is illegal for an unborn human being to have their life ended by abortion beyond 24 weeks, but if they have a disability their life can be ended right up to birth by law. Where is the consistency, the justice or the equality in that? If anyone thinks such obvious discrimination is acceptable, I respectfully invite them to imagine the outcry if the same were applied to skin colour or sexual orientation. Such discrimination would rightly be regarded as outrageous.'

3) It's not eugenics

Routine Down's syndrome screening and selection goes against the Charter of Fundamental Rights of the European Union which condemns "Any discrimination based on any ground such as genetic features, disability" and forbids "eugenic practices, in particular those aiming at the selection of persons". If we let genetic tests contribute to the screening out of people with Down's syndrome, nothing will ever stop chromosomic discrimination. The NIPT is just one small corner in a huge new field of genetics. We can already screen for many other things, so what's happening to the Down's community could soon enough happen to you. If you have a history of diabetes, obesity, Alzheimers, depression, it won't be long before we can prenatally screen out people like you.

The Copenhagen Post reported in October 2015 that Down's syndrome is "heading for extinction". This wording omits to describe the systematic measures taken to impede the birth of a targeted group of persons with similar genetic features, leading to the deliberate destruction of the group itself. Down's syndrome is becoming a death sentence. This eugenic practice needs to stop.

A different way

I loved Sally Philips' bold remark that if we have a society that is unable to care for people, the problem is not the person. To publicly offer screening tests is not the solution; the solution is to accept and support persons with Down's syndrome. As Christians we can positively model this different way by loving our neighbours with Down's syndrome and advocating on their behalf.

Our response

Pray. Pray that society would be challenged as to the value and worth of those with Down's syndrome and that Christians would lead the way in modelling a different, more compassionate way of thinking.

Learn more. Learn more about the realities of Down's syndrome. Watch and share the Sally Phillips documentary on social media (licence required):
http://www.bbc.co.uk/iplayer/episode/b07ycbj5/a-world-without-downs-syndrome?suggid=b07ycbj5

Ask your MP to support Lord Shinkwin's Bill. The Second Reading of his Abortion (Equality Disability) Bill is on 21 October. This timely Bill removes disability as a ground for abortion. Read more about the Bill here: http://services.parliament.uk/bills/2016-17/abortiondisabilityequality.html

Sign the Petition to the UN. The "Stop Discriminating Down" petition can be signed here:
http://stopdiscriminatingdown.com/

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