NIPTs: Human rights, ethical questions and a call for unbiased support

This morning I arose at 5.30, bleary eyed from late night research and failed first drafts of this post. The words were not flowing.

The rest of the household woke, and the bustle began, but one person noticed my pensiveness. Natty drew me down to her face level, looked intuitively deep into my soul and said ‘It’s OK Mummy.’

 

Are we giving the right support and having the right ethical discussions as we roll out NIPTs

I held her so tight, for a bit longer than usual and I made a silent promise into her warm hair, a promise that I would do my best to convey her worth to the world.

On the day Natty was born I wasn’t sure I was up to being her Mum. Ignorance took over. Everything I thought I knew about the condition was a smattering of outdated stereotypes, all of which have subsequently been proved wrong.

We have come so far as a family, risen to challenges, endured heart surgery, made adjustments and learnt to slow our pace and live in the moment. I wouldn’t change any of it. I am a better person now.  The pregnant women I was, whose heart was filled with fear at the words Down’s syndrome, now shakes her head in disbelief.

'I held her so tight, for a bit longer than usual and I made a silent promise into her warm hair, a promise that I would do my best to convey her worth to the world.' 

Society has come a long way too, from the days when children with Down’s syndrome were institutionalised with little or no love, educational support or quality healthcare.

We hope Natty will find employment she enjoys, have a partner of her choosing, a social life fuller than ours and live a long, healthy life independently with support.

You probably, like me, celebrate acceptance regardless of race, gender, sexual orientation or disability and feel thankful for the melting pot that is our modern lives. But do you include those with a learning disability in that equation?

We praise advances in healthcare and women’s control over their reproductive lives, but there is an important ethical debate that is being overlooked.

Hailed as ‘safer’ and a real advance for women, the non-invasive prenatal test (NIPT) could be rolled out by the NHS as part of their national screening programme. There is no health gain to diagnosing Down’s syndrome during pregnancy. It cannot be treated or prevented. It simply allows parents to decide whether to continue a pregnancy to term or not. The test is not diagnostic and still requires further invasive testing to reach a diagnosis.

The UNESCO International Bioethics Committee state that we must ‘ensure that the new possibilities of genetic screening, and in particular NIPT comply both with the right to autonomous choices and the principles of non-discrimination and non-stigmatization and respect for every human being in her or his uniqueness.” and that “No-one shall be subject to discrimination based on genetic characteristics.”

So giving pregnant women choice whilst not devaluing individuals with Down’s syndrome is a fine line to tread.

Are we giving unbiased, updated information to allow parents to make informed choices, or have we somehow assumed that those with Down’s syndrome are not compatible with life? Or worse, are we deeming that they are too costly to have a right to life?

We are promised that the new NIPT can allow parents to be prepared for their baby’s arrival, that it will not increase termination rates, yet in countries where DS screening has been standard for years, termination rates stand at almost 100%. Here in the UK it currently stands at around 91% of those who have an antenatal diagnosis. 

And whilst language used by some medical professionals is emotive and loaded, that route is being sold as a kind form of early euthanasia to trusting expectant parents, and a whole genetic group of people is being targeted. Babies are portrayed as a set of 'co-morbidities' according to the medical model of Down's syndrome. 

The support networks we have in place simply aren’t as sophisticated as the tests we are rolling out.

We need to explain test implications and outcomes ahead of carrying them out. We must support those who chose a termination and give equal care and support to those who chose to continue their pregnancies. We need charities that aren’t partnered with the test manufacturers. This shouldn't be about making money but about informed choice.

If parents are rushed into a termination, without being given a cooling off period to reach a decision or asked repeatedly if they would like to end their pregnancies up until 40 weeks, then we are certainly sending out the message that some lives are worth a great deal less than others.

We need the screening committee to welcome input from parental groups and self-advocates instead of closing their doors. We need to match up the wonderful examples of best practice by bringing committed midwives and learning disability nurses together, and we need to accept the value of difference.

I cannot bear to think that one day I will have to explain to Natty why others think her adored life is not worth living, or to justify her very existence, but here I am already doing just that.

And most of all I fear that one day I will be grieving, as others celebrate the eradication of all children like her. 

No Natty, maybe it’s not OK.

This post first appeared on Mumsnet.