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Why the New Prenatal Testing System in the U.K. Is Ableist and Dangerous

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In light of Non-Invasive Prenatal Testing rolling out into our NHS in the U.K. this year, a number of issues are preying on my mind. Let’s firstly acknowledge that NIPT is rolling out into a healthcare system that is geared towards women being led to terminate their pregnancy after a positive, or high chance, result for Down syndrome and other chromosomal variations.

There is no care pathway for women who are expecting a baby with DS, only a pathway that directs them towards termination. This is only one facet of why rolling out NIPT into our society is irresponsible and unethical. There is no proper supported consultation with the Down syndrome community. No acknowledgment of their concerns. No analysis of levels of prejudice and misinformation within the general population that leads to life and death decisions being made based on untruths. No up-to-date and accurate mandatory training for healthcare staff on Down syndrome.

There is a world of different views on prenatal testing circulating within the Down syndrome community. There are those who screened, had a low chance result and those who had a high chance result. There are those who had an amniocentesis or CVS, had a positive result and had a baby born with DS. And there are those who didn’t screen at all.

I had an amniocentesis, a positive result for DS and my daughter was born a few days later. And I have certainly been judged for it. Why is screening for a condition like Down syndrome perceived as such a bad thing? I would certainly take up the option of having NIPT, but then, I want to ensure that my unborn baby is carefully monitored should they develop any heart or bowel complications. I would use this new technology to ensure better care for my child. Unfortunately, my desire for more informed healthcare is not the way NIPT is currently being used.

And that is the scandal.

New technology that could be used to improve health for everyone has instead been used to target and eradicate people with disabilities.

I initially chose not to screen for Down syndrome. Why? I was under the assumption that screening for the conditions listed was only to decide if I wanted to have a termination. This is how screening was presented to me by our NHS. And this is why, when our culture is steeped in such prejudice towards people with Down syndrome, that screening is seen as dangerous to the community of people with Down syndrome in the U.K. I now know more about this and have knowledge of what I should have been informed of back then.

I chose not to screen for Down syndrome as I am a specialist in SEND and have an in-depth knowledge of Down syndrome. I had spent my life around people with DS and had no fear of it. I had no embedded prejudice. I had no discriminatory views on disability. Yet, my knowledge on the purpose of screening was at fault. Not due to me not reading all information given to me, I went through that with a fine-tooth comb, but due to the way the NHS uses and presents screening.

Screening could be used as a wonderful technology to identify babies that could potentially be vulnerable. We could be using it to inform high quality, differentiated care for both mother and child. For example, if a baby has a high chance of having Down syndrome then obstetricians already know the potential complications that could occur. This knowledge could be used to inform more intensive and detailed care. More frequent scans, targeted scans on the baby’s heart and abdomen to pick up any issues early as possible and monitor them and to trigger support for the mother and family from appropriate organizations.

Unfortunately, this high level of duty of care to an unborn baby who has DS is something that has been widely hidden from public knowledge. The technology exists to make pregnancy and births safer for both mother and child, but it has not been used for this purpose. Women are not presented with the full facts when it comes to screening. We are never told that it can be used to inform the care of our unborn baby. We are always told that it can be used to help us decide if we want to have an abortion.

The view of this healthcare tool is warped and twisted. It is viewed through the lens of screening out disabled babies. It is viewed through the lens of prejudice. And this is how it is presented to expectant mothers. This discriminatory use of an NHS healthcare tool needs to shift to be operating ethically while supporting equality and diversity. I was lucky I was having extra scans for gestational diabetes as it was at a 30-week scan, that I wouldn’t normally have had, that it was picked up the blood flow to my baby was failing and that she had duodenal atresia. That was luck. I am lucky I had diabetes.

By using screening and presenting it as a tool to identify babies that healthcare professionals think women may wish to abort, the NHS is failing both mother and child. Women have a right to know that they and their baby can be given more support and care throughout their pregnancy if their baby has DS. They also need to be told about the support and intervention their child will receive when born and the help they will be surrounded with throughout their life.

Can you really ever describe to someone how wonderful your child is, especially when our society is still only a few years beyond institutionalizing people with learning disabilities? That is not enough time to re-educate the general population on how people with Down syndrome are equal and have a right to their life. When doing some research last year I discovered that the 10% of women, like me, who have had a baby with Down syndrome after an antenatal diagnosis, mostly had already met at least one person with DS and had an accurate knowledge of it. I’m not sure a leaflet on DS, or even talking to other parents who have children with DS can truly show you the truth. There’s a reason most people have never met a person with DS. The words are “minority community.”

I’ve heard a lot of ableists try and explain the reasons why a woman might consider a termination after finding out their child has DS. What they fail to realize is that they’re talking to a disabled woman who doesn’t view the world through their ableist eyes. I believe everyone is equal and deserving of the correct support they need in life. Including myself.

When they say “She might have mental health problems,” I find that offensive. Why should a woman like myself with a condition like bipolar disorder be painted as weaker and unable to care for a child? Why are we not talking about the level of support, in terms of care and respite, that would categorically ensure women like me can feel absolutely confident in becoming a mother? Why are we not singing the praises of social workers and health visitors who are there 24/7 to help us? We’re not alone on this journey.

Instead, women are disempowered by being made to feel that they are alone in this. All the suggestions that “You have to do what’s right for you” further impress upon women that they are solely responsible for raising their child. Nothing could be further from the truth. The constant emphasis of “you” alongside the severing of father’s rights further isolate women from the massive support network available to them. They are kept in the dark.

When they say “She might have financial problems,” I find that pretty vile. Why should women like me who live on a low income be seen as not the kind of person who should become a mother? Surely we should be reassuring women like me of the support net of allowances and disability benefits available that would help provide financial security? This insinuation always stinks of the origins of eugenics — seeking to prevent the lower classes from breeding. I could go on. There are so many reasons that ableists give to justify the eradication of babies with disabilities.

I believe our society needs to shift towards truly embracing equality before any further screening rolls out. We need minority communities to be included in the center of our society. We need people to be able to see people with disabilities in life, on screen, in print. We need people to begin to re-learn what they have been taught about disability throughout their life.

We need time.

And until we can ascertain that the unconscious bias of the population has dissolved.

Until we can gauge that levels of prejudice and bias have disappeared.

Until we can assess what misinformation the public currently believes and re-educate them.

Until the NHS is cleansed of its discriminatory practices.

Until then, we should not be rolling out further screening. At all.

Originally published: February 9, 2021
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