'They want to make part of the human race extinct': The debate over a new pregnancy test for Down's syndrome

The Welsh Government has defended a new test for Down's syndrome in pregnancy against accusations it is trying to eliminate the condition from society.

Wales has become the first country in the UK to offer non-invasive prenatal testing (NIPT) on the NHS aimed at women who have a higher chance of Down’s, Edward’s or Patau’s syndrome.

It involves a blood sample and is offered as an alternative to an invasive test which carries a risk of miscarriage.

The new test will be offered to some mothers who have chosen screening Credit: ITV Wales

Down's syndrome is the most well known of the three conditions.

Around 40,000 people in the UK live with it and each have different degrees of disability. It is caused by an extra chromosome.

There are associated health conditions including learning disability and potential heart and other problems but every person with the condition is different.

21 Plus, a support group for parents who have children with Down syndrome meet weekly in Abergavenny.

Some mothers told ITV News that while they have no objection to a safer test, they do question the thinking behind it.

Some fear it could lead to more pregnancies being terminated.

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Tanika Bartlett-Smith questions the thinking behind the test Credit: ITV Wales

Language and the conversation around a positive result is the biggest concern.

Tanika Bartlett-Smith is proud of her little boy Leo. “He’s changed all of our families lives for the better” she said.

However, the occupational therapist said she faces a constant battle with the medical profession about the language used.

I have been told 'I was one of the unlucky ones', whereas I would say I agree with the phrase ‘lucky few’ because we are extremely fortunate to have a child with Down syndrome.

It is quite frightening because if you have to educate health professionals, then how do you educate the general public?

– Tanika Bartlett-Smith
Leo Bartlett-Smith was born with Down's Syndrome Credit: ITV Wales

Tanika believes language is more important than ever because of the introduction of the new test.

Choice is good, what frightens me a lot is that this isn’t a choice being offered to be people with information on how well children with Down syndrome develop, the normal life they live.

This choice I think it is very much directed towards eliminating Down Syndrome, it’s almost like they want to make part of the human race extinct.

– Tanika Bartlett-Smith

She would like to see a change the conversation around a positive result.

"I think if they (medical profession) were to do the test and were to say ‘yes your child does have Down Syndrome, however this is the life they can lead, this is the positive experience of fellow parents - now would you like to make that decision?’ Then I think that’s understandable, but I don’t think that is being offered.”

Sharon Hillier from Public Health Wales says information has been updated Credit: ITV Wales

The Welsh NHS accepts language has needed improving and clinical leaders say they have updated information given to expectant mothers.

We’ve worked hard in our documentation and information to use the language that charities have informed us about. We just need to ensure we consistently using that.

It is important that women are supported with information about the conditions and the screening offered so they can make the right decision for them as to whether they want to accept this offer.

Health professionals involved in discussing the screening with women have undertaken training which has focused on personalised choice and up to date information on the conditions screened for.

– Sharon Hillier, Public Health Wales
The Welsh Government says this is not about eliminating Down's Syndrome Credit: ITV Wales

In an interview for ITV Wales, Health Secretary Vaughan Gething says NIPT is about informed choice and not eliminating Down Syndrome from society.

I understand the very natural emotion of parents of who are concerned and understandably in the way the test has been talked about in some quarters but I do really want to reiterate this is not about removing people with Down’s, Edward’s or Patau’s syndrome from the population.

– Vaughan Gething AM, Health Secretary

Some people with Down Syndrome support the new test.

Sara Pickard supports the test saying it comes down to the right information Credit: ITV Wales

Sara Pickard has the condition. She’s an actress, local councillor and has been named one of Wales’ 100 leading women.

I think that having the test there is a good thing because it gives that choice to that mother because they can then decided what they want to do.

I do think the important thing in this is that they do have the right information out there.

– Sara Pickard

The Welsh Government said the test will be be evaluated over the next three years.

You can see more about this story on Wales This Week: The End of Down's Syndrome? tonight at 8pm on ITV Cymru Wales.