Guest post: "I fear the eradication of Down's syndrome"

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 Everything I thought I knew about Down's syndrome was a smattering of outdated stereotypes, all of which have subsequently been proved wrong.

In eight years, 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 woman I was, whose heart was filled with fear at the words Down's syndrome, now shakes her head in disbelief.

I've been bleary-eyed over research for this post. And, in fact, as I rose at 5.30am, drafts of what I would write very much in my mind, there was one member of our busy household who noticed my pensiveness. Natty drew me down to her face level, looked intuitively at me and said 'It's OK Mummy.'

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

Because while we praise advances in healthcare and women's control over their reproductive lives, there is an important ethical debate I fear is being overlooked.

A new non-invasive prenatal test (NIPT) could help identify women whose babies have Down's syndrome. The test involves taking a sample of blood from the mother and it uses this to detect the baby's DNA.

At the moment, the NIPT test is available privately, but it could soon be rolled out by the NHS as part of their population screening programme. The UK National Screening Committee has just ended consultation over offering it - it can only be added to the programme if there is a beneficial reason for doing so.

However, there is no health gain in 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.

There are ethical implications to genetic testing, but no easy answers. The UNESCO International Bioethics Committee says that genetic testing can offer women the right of choice. However, it could also become routine that ill or disabled children are not to given the choice of birth at all.

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

We must ensure that parents are given unbiased, updated information in order to make informed choices. There can be no assumption that those with Down's syndrome are not compatible with life - or worse, 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 and that it will not increase termination rates. However, in countries where Down's syndrome screening has been standard for years, termination rates stand at almost 100%. Are these tests being sold as a kind form of early euthanasia to trusting expectant parents - and will a whole genetic group of people be targeted in the process?

The support networks we have in place simply aren't as sophisticated as the genetic tests being considered. We must explain test implications and outcomes, support those who choose a termination and give equal care to those who choose to continue their pregnancies. We need charities that aren't partnered with the test manufacturers.

If parents are rushed into terminations, or asked repeatedly if they would like to end their pregnancies, 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. 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.

Society has come a long way 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.

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 even 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 my beautiful daughter. No Natty, maybe it's not OK.

The BBC is making a documentary about Down's syndrome, which Hayley Gowleniowska is contributing to. If you are affected by the tests and interested in an initial off-the-record research chat, please contact Clare at [email protected].

Yep. You don't have to be intelligent to be relatively independent, to empathise, to be happy and to develop practical life skills.

Life isn't about how many qualifications you can score.

1- abortion is not genocide. Referring to it as such is despicable.

2- it is up to the parents to decide what to do after getting the news that their child has Downs, nobody elses. If they want to abort/not then that's their choice, not yours. You have no right to use such emotive language to make them feel guilty.

3- As science grows more advanced it might become possible to splice a fetus' DNA to reverse Downs while they're still alive. Would it still be 'genocide' then? If not why not? Doctors would still be eradicating the disease.

As you can tell I find this post absolute trash.

Absolutely. It is the choice of the individual to terminate or not for whatever reason they choose.
Some of us have concern that the choice may not be a fully informed one.
That disability is often perceived to be a bad thing when it isn't always, and it plays a very important part in life's tapestry.

"disability is often perceived to be a bad thing when it isn't always"

Really? I can't think of a good disability, one anyone would be happy to have.

"and it plays a very important part in life's tapestry"

I don't understand what "life's tapestry" means here. When polio was conquered, the number of disabled people decreased overnight. Was that a bad thing for "life's tapestry"?

zzzz - re your questions:

1. Why would life be better for you without DS adults in the world?

It wouldn't be better or worse for me, personally.

2. How would society benefit from not having DS adults in the world?

There aren't enough adults with DS in society at the moment, so any benefit would be insignificant overall, but I suppose it would benefit in the sense that an increase in education, health, and abilities of its members benefits any group of people.

3. If you could test all potential humans before they were CONCIEVED and select only those with IQ's over 90, would you do that and why?

Yes, for their own good and that of their families.

No doubt I will now get told they are all so happy, it's all a bed of roses for the families and it's offensive to suggest it might not be but you asked.

Meanwhile, a landmark judgement delivered this morning in Belfast high court can apparently mean that women will soon be able to have abortions in Northern Ireland for foetal abnormalities, rape, and incest.

Sometimes it's easier to just ignore people zzz :)

Nobody is talking about "removing" people who are already here.

Your question was about preventing the conception of fetuses which would develop into people with an IQ under a certain level. Not murdering people whose IQs are under that level.

Why on earth would zzz ignore the answers to questions she has asked?

Nobody else seems to have bothered to answer them

I have disabilities.
I don't think anyone would consider them 'nice'.

But I don't know any different therefore I do not miss something I know nothing about.

I definitely consider my life to have been worthwhile. I do make a contribution to society and I don't consider the value of my life in monetary terms.

When you say "removing from the population", it sounds like you are talking about people who are already in the population. That is why I keep saying this isn't about killing intellectually disabled people but preventing more from being born. You can't remove something that isn't already there, afaik.

Would you be less "creeped out" if the question was about preventing the conception of babies who are genetically programmed to have such low intelligence as it to be considered a disability?

If it were possible to prevent the conception of fetuses who will develop into people who will be deaf and blind, would you do it?

Was it a bad thing when polio vaccine caused a decrease in the number of disabled people in the population?

Not every person considers low intelligence a disability in itself.

How society TREATS those with intellectual impairment can be very disabling. Which is also the case for social communication and mobility impairments.

I think you will find that people with IQ under 70 are said to have "learning disabilities" of various degrees. (See Devilish's post below)

Then again, Asperger's Syndrome is also considered a disability, apparently. It seems anything permanent that affects a person negatively is called a "disability" these days.

Asperger's Syndrome is generally far less "disabling" than very low intelligence. And people with AS tend to get better at managing the world & their relationship with it in time.

If you consider it a disability, I am surprised that you don't consider very low intelligence to be one.

Hm some people with AS can be very disabled by their condition.

And I know there's no fucking point but life's rich tapestry

And

www.boredpanda.com/down-syndrome-portraits-first-and-foremost-i-am-sigridur-frimannsdottir/

And

heartandsold.org.uk/

I can't bear totally neurotypical events :shudder: A uniform world of worker drones doesn't sound that fun to me