15/01/2016 08:21 GMT | Updated 15/01/2017 05:12 GMT

Education and Ethics: Down's Syndrome Testing

As I sit here in my office listening to the howling wind outside, it's more than my toes that feel a certain chill.

I hold in my hand a press release from the UK Screening Committee with recommendations for the staged rolling out of the new Non-Invasive Prenatal Tests, or #NIPT. These tests look for a woman's 'risk' factor of having a baby with Down's syndrome, Patau syndrome or Edward's syndrome.

It was embargoed of course.

Such secrecy. Such planned drip-feeding of information to the public. So much goes on behind closed doors.

Of course our community knew this was coming. Of course we knew the test would be rolled out 'as standard', albeit in phases. The press release was not a shock.


Yet still I shed a tear when I read it. It says nothing earth-shattering, it's wishy washy. But it is symbolic.

And why will this news cause upset millions today?

They will see a link. Or a retweet. Or someone will mention it at the school gates.

The claims will go like this:

'Miracle new test will cut miscarriage rates'.

'Safer, earlier test detects chromosomal abnormalities'.

'NHS to roll out new test to women at risk'.

'Disability activists have concerns.'

or similar.

And we will spend the day justifying our children's lives.

And explaining that as miscarriages lower, terminations will increase. The test is not diagnostic, an invasive procedure is still needed to confirm a diagnosis.

We will point out that the test is optional.

My daughter was not a 'risk', and neither was she 'abnormal' in any way. She is what she was meant to be. Down's syndrome has been around since the beginning of time.

And militant activists we are not - rather parents with heart, those who know, the true experts, wanting the best for all and willing to share and educate and support.

My head knows we are inching forward with key medical professionals to provide training to enable them to give truly unbiased support. Working together is vital.

My head knows the learning disability nursing teams are on standby to help new parents.

My head is proud that the debate surrounding the ethics of a screening programme designed to target one particular genetic group is in the public domain now, that questions are being asked.

But still I sit here with a heavy heart waiting for those hurtful headlines and the terminology that will sting. I think of countless other families, more importantly those reading and listening who have Down's syndrome themselves, who will smart at the celebrations they see.

Today this will explode on our screens. And I weep for the much wanted babies to be lost, each one of them who would bring as much unique wonderment to the world and their families as Natty does to ours.

So let's continue to educate and be the change we wish to see in the world, however hard that may seem. Let us share honestly the joys and challenges of bringing up a child with Down's syndrome to allow others to make truly informed decisions.

This post first appeared here on my blog Downs Side Up


The press release from the UK Screening Committee 15/01/2016

Introducing Non-Invasive Prenatal Testing (NIPT)The committee recommended that Non-Invasive Prenatal Testing (NIPT) be introduced as an additional test into the NHS Fetal Anomaly Screening Programme (FASP) as part of an evaluation. Ongoing monitoring and evaluation will mean that the test is rolled out across England in such a way that the screening programme can be altered if necessary in light of any real life findings. FASP offers screening to women in pregnancy to find out how likely it is that their baby has Down's syndrome, Edwards' syndrome, or Patau's syndrome. The new test is more accurate, meaning that fewer women will need unnecessary diagnostic tests, which can potentially mean a small risk of losing their baby.