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NIPT and disability

Prof Tom Shakespeare discusses how to think about NIPT in the context of disability.
So, I’m Tom Shakespeare, I’m the professor of disability research at the university of East Anglia. And for me NIPT is an improvement on previous technologies. It will reduce the number of women who are at high risk for Down syndrome and other aneuploidies who have invasive testing. Of course, a proportion of those would lose their pregnancies. So, if this reduces the number of women who are having invasive then that is good. It is also a more reliable test. It has got a higher predictive, positive predictive value, has fewer false negatives and a few fewer false positives. So, in all senses it is a better test. I think, however that in ethical terms it takes away, as it were, a threshold.
In the past women had a whole battery of tests, serum tests and ultrasound and then if they are at high risk they were faced with a quandary. Do I want to have the diagnostic test? Because I have to be pretty clear about that. There is a, at least nominal risk of miscarriage. So, they thought more about it I think. Now, with the NIPT, they can have another test without worrying. So, it is both good, because they don’t have to worry but it is also bad because they can just go, “yeah, of course, it is just a blood draw, it is not invasive or dangerous in itself.” And then they are faced with a much tighter issue.
So, I think, that this selective termination, screening of Down Syndrome, is an important moral question. I support women’s rights to choose. But I believe it is an important decision I think the loss; the ending of any pregnancy is sad. So, therefore, it is not something that should be done lightly. And I don’t trivialise women’s reproductive decisions or those of their partners. And I know that they are very troubled often and they think very hard about it, but, I think they should. And therefore, I worry slightly that NIPT makes it a bit more routine, more easy, more automatic. Women have a lot of blood draws in pregnancy. They don’t know what they are all for, here is another one.
“Gosh, I am very high risk. I didn’t know. Maybe I didn’t even know that I was being screened.” So, I think, we need to make sure that there is real choice. Which means women thinking. It means women being given balanced information. And that is not just information about the trisomy’s, aneuploidies but also information about living with Down Syndrome or the other conditions, Patau, Edwards, whatever. And then they can work out for themselves. And for me, also, they need to do that thinking and make those choices in the context of a society which is welcoming, accepting.
So, that they can know that if they have a termination they will be supported and if they continue the pregnancy and have a Down’s baby they will be supported, their Down’s baby will be supported. They will get inclusive medication, they will get a chance in life. Otherwise, they are making a decision on the basis of the sort of society they live in. And I think that is where it gets more eugenic, more dangerous. So, we’ve got a long way to go before we offer what I would call a really full choice.
So, by offering a test, let’s take Down Syndrome, by offering a test for Down Syndrome you could be saying, well, this is the sort of thing you should prevent. And I think you have to be very careful to be non-directive, to use language that is not pathologising. So, I use anomaly rather than abnormality. You might want to use chance instead of risk. You might want to use words like significant rather than serious. There are all sorts of ways that we can try and make sure the information is non-directive. But we are still left with the question that, hang on a minute, that all accepted, we are still offering a test for this condition.
We must think it is better not to have it. I think that life with disability can be very good. It can be very good for people with Down Syndrome and for people with Achondroplasia, my condition and all sorts of disability. And if you look at the reported quality of life the evidence is that it is not just me, it is most people who have the condition think that. So, if it is so good why would we want to prevent it? And I think that the evidence of quality of life is about subjective adjustment and it is, in the case of people who have always had the condition, it is about not having known any other.
It is also valuable evidence that what makes life worthwhile is not the sort of body you live in or mind you have, it is wider familial and social things. Because I want to say two things. I want to say life with disability can, often is, good. If it is not good it is often due to social factors. And I want to say that impairment, disabling conditions, health conditions, whatever you call them, are things that we might want to prevent. We want to prevent Polio, we want to prevent road traffic accidents, we want to prevent strokes. We are not neutral about them. We don’t think bring them on, it is all fine.
We know that people with spinal injury have good lives, so don’t look both ways when you are crossing the road. We have this, you could call it a dissonance, but I think at the one stage we think life is good and we will support that, the other side we think, well, it is better, you know, if we can prevent it we should prevent it. Disability is not a neutral characteristic. It is not like gender or race or sexuality or whatever else. It effects your life. It limits your life. It is a predicament. What I have said in my work is it is a predicament. It makes life harder, more difficult. It closes down options. I love cycling, can’t cycle.
I’d like to ski. It is very difficult to ski. It reduces my options. I have more pain and the rest of it. I still have a very good quality of life. I don’t think my life it terrible. I think it is great. It would have been better if I hadn’t become paralysed. And similarly, a person with Down Syndrome, there are all sorts of options. They can have a good life. They can do all sorts of things. They are not going to be a brain surgeon they are not going to be able to go Cambridge. They are not going to be an MP. It narrows down those options.
They may live independently, they may always need support, still living a good life but it narrows down their family’s options. And therefore, I think it is of sufficient sort of seriousness that people should be allowed to think about it. I don’t disagree with abortion. I think it is sad but I think it is part of a free society. Therefore, why should I say you can have a termination of pregnancy because you’ve had too many children, or because you don’t want to have a child right now or not with this man or whatever it might be which you could say are social reasons and nothing to do with the foetus.
But you can’t have a termination about this very specific and important point to do with the quality of life, the type of life, and the type of family you’ll have. It just doesn’t seem to fit. So, if termination is allowed, it should be allowed for this.
And, therefore, I think if a test is possible it should be permitted for this. But only in a context where we give balanced information, non-directively because it is a really private decision. It is about their person and their partner. It is about their values. It is about the sort of life that they think they want to lead, that they think a child might want to lead and so forth and so on. So, I am not going to say what is wrong and what is right. But I want to leave it to them to do what is best for them.

Tom Shakespeare is a writer, public speaker, and professor of Disability Research at the Norwich Medical School, University of East Anglia.

As a medical sociologist, he has researched and written about disability and genetics for many years.

He also brings the unique perspective of being a wheelchair user himself, as he was born with achondroplasia. He was a member of Arts Council England from 2003-2008.

Although the focus of his research is primarily the UK setting, he has also worked for the World Health Organisation (WHO) and helped to produce key reports such as the World Report on Disability (WHO 2011) and was responsible for the UN statement on forced, coerced and otherwise involuntary sterilization (WHO 2014).

In this wide-ranging interview, he discusses the tension between genetic screening and eugenics, and offers his own views of what the important things to bear in mind are.

For your discussion: What do you think about Professor Shakespeare’s view that NIPT is an improvement on the current antenatal screening?

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