Does the New Down's Syndrome Test Cross an Ethical Line?

 6th Apr 2018

Roughly 40,000 people in the UK have Down’s syndrome and around 750 babies are born with the condition each year.

There is no clear reason what causes Down’s syndrome other than a parent (or parents) being a carrier for the condition.

We do know that there is nothing that can be done before or during pregnancy that can cause Down’s syndrome to develop or to alter the odds one way or the other.

Classified as a learning disability, Down’s syndrome can bring with it some developmental challenges, but with correct support these can be overcome.

People with Down’s syndrome can – and do – lead happy and fulfilled lives.

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The Test

Which is why a new advanced test for identifying Down’s syndrome has a lot of people nervous as some believe it could see an increase in terminations and ultimately people with Down’s syndrome could disappear from society altogether.

The non-invasive prenatal testing will be offered to women who have a higher likelihood of giving birth to babies with Down’s syndrome but will eventually become universal as it has done in countries like Iceland and Denmark.

Countries that have seen close to 100% abortion rates of foetuses with Down’s syndrome.

Isn’t that a Good Thing?

Regardless on your stance surrounding abortion – we would argue no, it isn’t.

Although Down’s syndrome brings with it challenges, there is an assumption by the vast majority that having a child with Down’s syndrome will somehow ruin the lives of the parents and everyone around them.

Contrary to popular opinion, individuals with Down’s syndrome are capable of living fulfilled and happy lives with the minimum of support which includes sustained employment, independent living and forming relationships of their own.

So any notion that an individual with Down’s syndrome is a burden to society is simply false. Even so, societies are meant to look after everyone; not pick and choose who should and shouldn't be supported.  

Crossing the Line

It’s important to acknowledge that this advanced test doesn’t come from a sinister place or a conspiracy to cleanse the human genome.

However it’s hard not to see the precedent this sets.

When smallpox was eradicated in 1980 it was hailed as the single greatest humanitarian achievement in history.

And with good reason: smallpox killed possibly as many as 500 million people.

When AIDS and cancer are cured these two will be celebrated as remarkable feats of human ingenuity in the face of terrible adversity.

But Down’s syndrome isn’t a disease. It doesn’t shatter lives, leave millions dead or families broken. It is a learning disability that a tiny number of people develop. The majority of who lead their lives as anyone else.

Whereas the smallpox vaccine changed the world for the better there is arguably no benefit at all in eliminating Down’s syndrome from society.

Although this isn’t a calculated effort to eliminate Down’s syndrome, this test somewhat contravenes the imperative to do no harm. Plus it’s hard to ignore the subtext – one life is more valuable than another.

Of course the information is merely provided and it’s the expectant parents who make the decision. But the issue instead could be a lack of understanding about Down’s syndrome or, worse, the wrong kind of information.

Only time will tell if the UK follows Iceland and Denmark’s course, or if we choose to embrace the differences our children can bring to our lives.

 

Encompass Dorset supports individuals with learning disabilities – including those with Down’s syndrome – in a number of different ways either in a supported setting or out and about living life to the full. Contact us today to speak to one of the team.

 

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