Down syndrome screening could eliminate a group of people, says mum

Stuff 20 June 2015
OPINION: Upon delivering my first child 11 years ago, I heard the words “Down syndrome”, and my world collapsed. Visions of children sitting passively in a corner watching life go by, not participating, kept me awake those first nights as a mum.

It didn’t take me long, though, to figure out that my ideas were based on negative, outdated information that had nothing to do with the reality of life with Down syndrome today.

My daughter April is an active, outgoing girl. She’s my nature child, wildly passionate about anything with four legs. Although April uses few words, she’s a master communicator. Through her, I’ve learned that Down syndrome is not the scary, terrible condition it’s made out to be.

But while governments (rightly) ban gender selection, selective abortion continues to be encouraged for children with Down syndrome. In the United States and abroad, screenings are a routine part of healthcare programmes, and the result is the near-elimination of these children.

When pregnant with my daughter Hazel, tests showed she, too, would be born with Down syndrome. I was shocked when an acquaintance asked me why I did not choose abortion – as if she were a mistake that could be easily erased.

Although my personal prejudices have radically changed since the birth of my first daughter with Down syndrome, I realised that negative attitudes about the condition remain deeply rooted.

To many, my children and their cohort are examples of avoidable human suffering, as well as a financial burden. Knowing that individuals look at my daughters this way hurts, but seeing governments and medical professionals worldwide reinforce these prejudices by promoting selection is horrendous.

Denmark was the first European country to introduce routine screening for Down syndrome in 2006 as a public healthcare programme. France, Switzerland and other European countries soon followed. (For information on screening practices in New Zealand, click here).

The unspoken but obvious message is that Down syndrome is something so unworthy that we would not want to wish it for our children or society.

With the level of screening among pregnant Danish women as high as 90 per cent, the Copenhagen Post reported in 2011 that Denmark “could be a country without a single citizen with Down syndrome in the not too distant future”.

In 2011, the newest feat in prenatal testing was introduced: the NIPT (Non Invasive Prenatal Test). This DNA test can, with reasonable accuracy, detect Down syndrome in early pregnancy from a single drop of blood taken from the mother. Hailed by medical professionals as the holy grail in prenatal testing, the NIPT has quickly spread across the globe.

Recent research in Britain indicates that introducing the NIPT leads to a higher uptake of screening. With termination rates varying around the world from about 67 per cent in the United States to an average of 92 per cent in Europe, this will promote even more intensive de-selection of foetuses with Down syndrome, which in turn will negatively affect their position in society.

I don’t judge the women who make the choice to terminate. It must be hard to withstand the bias of medical professionals, people you trust most with your health and wellbeing, when you’re pregnant and vulnerable.

A 2013 study reports that parents are 2.5 times more likely to have a negative experience on receiving the initial Down syndrome diagnosis than to have a positive one. One in four participants said they had been encouraged by a medical professional to abort, and many received inadequate information and little compassion.

With DNA tests popularly referred to as the “Down test,” the primary aim of testing needs no further explanation.

I detest the fear that is cultivated by medical professionals, the medical industry and politicians about giving birth to a child with Down syndrome. Down syndrome does not cause human suffering.

The real danger lies in voices that claim our children need to be tested before we can decide who is worthy of life. Women are not incubators of socially preferable descendants.

As a mum, former president of a Down syndrome society and spokesperson for Downpride, a grass-roots parent group, I find most people with Down syndrome possess an enormous zest for life, making them very pleasant company, and there are many firsthand accounts describing the ability of people with Down syndrome to bring simplicity and openness to communities. But these aspects of the condition remain understudied.

One 2011 study did show that the brothers and sisters of people with Down syndrome overwhelmingly feel love and pride toward their siblings; participants also credited having a sibling with Down syndrome with enhancing their lives and increasing their empathy.

Nevertheless, like other European governments, the Netherlands is currently considering permanently including the NIPT, primarily aimed at Down syndrome, in its prenatal screening programme.

An American-European-Canadian study on DNA screening for Down syndrome was published in the New England Journal of Medicine this year.

Dick Oepkes, chairman of the Dutch NIPT consortium, called results “positive,” stating in a recent interview: “Surveys show women experience waiting for test results arduous. Offering the DNA test as a first step will allow women who consider terminating the pregnancy to make their choice before they have felt the foetus move.”

The irony is that for a baby with Down syndrome born today, the outlook has never been better. Medical and social advances have radically changed what it means to live with Down syndrome.

Most people with Down syndrome are included in schools and communities. They live healthier, longer lives, and many adults live independently, have jobs and enjoy a rich social life. In 2013 a young woman with Down syndrome became Spain’s first councillor.

One study showed that the majority of people with Down syndrome report being happy and fulfilled, regardless of their functional skills.

This is why Downpride is calling on the United Nations High Commissioner for Human Rights to stop systematic screening for Down syndrome as part of public-health programmes and to regulate the introduction of prenatal genetic testing – testing should be used to enhance health and human wellbeing instead of discriminating against people based on their genetic predisposition.

Screening and selection say nothing about the inherent worth of people with Down syndrome. They say everything about the elevation of the capacity for economic achievement above other human traits.

My children are fascinating, demanding, delightful, present, annoying, dependent, loving, cuddly, different, unpredictable and completely human, just like other children. They are not a mistake, a burden or a reflection of my “personal choice,” but an integral part of society.

If we allow our governments to set up health programmes that result in the systematic elimination of a group of people quite happy being themselves, under the false pretense of women’s rights, than that is a personal choice – one we have to face honestly.

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