My thoughts about the new NIPT tests

Billy and my hands

In my day job, I’m a Careers Adviser and my role involves working with young people with learning difficulties and disabilities and supporting them to achieve employment, training and independent living.

This morning I received quite a few messages people telling me about the new NIPT.

According to National Coalition for Health Professional Education in Genetics (NCHPEG):
NIPT, which analyzes cell-free fetal DNA circulating in maternal blood,  is a new option in the prenatal screening and testing paradigm for trisomy 21 and a few other fetal chromosomal aneuploidies.

I turned on BBC Radio Scotland and heard Lynn Murray from Don’t Screen Us Out campaign.

This test has been controversial and topical, but I feel it’s more than a test. We are arguing about the economical, social and medical sides. Here’s what I think.

“What do you think of the new screening test for Down’s syndrome?” someone asked me on Twitter a few months back. The answer was not straightforward one. I answered: “It depends which angle you are looking at it from, whether it’s scientific, medical or emotional.”

Today, visiting my late son’s grave made me appreciate the time we had with Billy. I had the chance of loving him in my arms, feeding him, kissing him and he brought smiles on his little siblings’ faces. They adored him greatly.

Before you ask, no, we didn’t do any tests to check whether he had Down’s syndrome or not. None of our kids were tested. We felt that once their little hearts started to flutter they were our babies. Whoever wanted to come and join our family we welcomed them.

As with many diagnoses or any unexpected news we were shocked and grieved when we were told about Billy’s extra chromosome 21. We are only human.

Six years on after Billy’s death, the new NIPT test is being discussed. I have some concerns about the new test not only as someone who campaigns for human rights but also as a mother and a career coach. I work with young people with learning difficulties and disabilities as part of my job, advising and supporting them through career planning. From applying to college and any employment opportunities it is clear that they feel the discrimination. In an application form they are very aware of what to put in regards to which school they went to. That’s even before the interview stage, before coming face to face with the interviewer, and not having been given the chance to show how capable they are, how wonderful their personality is. I feel that the new screening test mirrors this type of discrimination in society. People with extra chromosomes can be written off as soon as it is discovered.

With the existing tests, already over 90% of babies with Down’s syndrome are aborted before birth in UK. It’s important to consider that the parents of those babies aborted before birth might be the ones having already made decisions about equality, and thereby screening college and job applications. With the new screening NIPT tests, the decisions to abort are likely to increase. I’m not saying people shouldn’t have the tests. We chose to have a test for our youngest who was born after Billy. We needed to know and be prepared. The important thing is that parents should be given balanced information about life with a child with Down’s syndrome. When introducing new tests we need to be aware that they are carrying many messages in our society.

I support the campaign ‘Don’t Screen Us Out’ and agree that a medical reform is needed to support parents who have a diagnosis or probable expectation of Down’s syndrome. These consequences would have a profound long-term effect on the population of the Down’s syndrome community and how society accepts disability.

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