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"I think it is very much directed towards eliminating Down Syndrome": debate on screening in Wales

13 June 2018

 
Welsh mothers of babies with Down's syndrome speak out against prenatal screening.

Discoverer of genetic link was pro-life and horrified that it was being used to screen out babies with the condition 

When the Welsh Government confirmed last year that it would become the first part of the UK to introduce non-invasive prenatal testing (NIPT) within its antenatal screening programme, it did so without consulting people with Down's syndrome and their families, or considering what impact it could have on their communities.

Now, the Welsh Government is having to defend itself against accusations that it is trying to eliminate people with the condition from society.

"They want to make part of the human race extinct"

Mothers interviewed by ITV Wales, questioned the thinking behind the test and said they feared that the test will lead to more babies with Down's syndrome being aborted. Their views is in line with that of  Don't Screen Us Out Campaign, which achieved a high media profile when the issue was being debated in England.

Tanika Bartlett-Smith, mother of Leo, says there's more to NIPT than simply offering parents the choice of a "safer" 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," she said. "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."

Frightening language from medics

Such language has come up before. CBSN published a widely viewed report, examining the situation in Iceland, where prenatal screening was introduced in the early 2000s. The channel tweeted the report with the description "Iceland is on pace to virtually eliminate Down syndrome through abortion."

Ms Bartlett-Smith said that a lot of the problem is the language health professionals use when talking about babies with the condition. "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?"

Actress Sally Phillips, whose documentary, A World Without Down's Syndome ​brought the issue of prenatal screening to national attention, had a similar experience. "When the doctor told me Ollie had Down’s syndrome, he said 'I’m sorry', and the nurse cried and that was 11 years ago. But, you hear those stories still today."

Other mothers interviewed by ITV also spoke out against the test. One said that screening for Down's syndrome in particular "reeks of eugenics", while another said "if we could wind back the clock and take this test away, I think the majority of people would." Welsh Health Minister Vaughn Gething said that the test was about helping parents to make "informed choices". 

Tragic history of screening

It was pro-life geneticist Jerome Lejeune (who's birthday falls today) who first discovered that Down's syndrome is caused by an extra copy of the 21st chromosome. He had been hoping to find a cure for the medical problems associated with the condition, and was horrified when his finding was used to bring in prenatal testing that targeted the very children he was trying to help. This talk from the 2017 Youth Conference gives the history of Prof Lejeune's work, and the ethical problems with screening for Down's syndrome.

 

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