Choosing Down syndrome

Many places offer routine prenatal testing for Down syndrome, and the implication is that you wouldn't want a child who had it. But maybe you would. 

Both my pregnancies were in the latter half of my thirties — "geriatric" was the term of art — and since the risk of Down syndrome goes up with maternal age, I was offered screening. Both times I accepted. Screening consisted of a blood test and an ultrasound, and, combined with my age, it made a prediction. More invasive tests, like amniocentesis — which I underwent the second time — give more definitive answers. Easier tests have come along since then.

It's not that I didn't give any thought to what I was doing — I did — but in retrospect, perhaps I didn't give the right kind of thought. I did not examine the implications. The fact that the testing was supported and paid for by my provincial health insurer somehow got me off the hook; someone else had pre-thought on my behalf, and they had decided that the condition was undesirable.

As it turns out, neither of my children had Down syndrome. But in the years since they were born, I have often found myself feeling grateful that there were no tests for the things they do have. Because they do have things. Everyone does. You do. Your kids do. Your friends' kids do. And it's only a matter of time before it all becomes testable. What will we do then? 

In his powerful book, Choosing Down Syndrome, Chris Kaposy, a bioethicist at Memorial University in St. John's, Newfoundland, asks us to reexamine the cult of prenatal testing.

What we talk about when we talk about Down syndrome

Anyone who does any kind of prenatal test these days will likely test for Down syndrome. How did it become so routine?

The history is very interesting. We have prenatal testing for Down syndrome because it's really easy to identify. When you look at the chromosomes, you can see there are three copies of chromosome 21, instead of two. It's called Trisomy 21. It was one of the very first things that medical professionals were able to devise a test for, using technology that was available decades ago.

But it's not just that. People with cognitive disabilities like Down syndrome have a long history of being oppressed. For much of the 20th century, they were shipped off to institutions where they lived and died in squalor. They were given no education. There has also been a long-standing bias against raising children with Down syndrome. 

So when you have that long-standing bias against Down syndrome and then you have the ability to test for it, it seems like an obvious thing to conclude that you wouldn't want to have a child with this condition. There's a test available, so obviously you're going to take it. 

It's only with the disability rights movement, and disability rights scholars and activists and self-advocates, that this way of thinking has been questioned. 

What is the harm in making testing for Down syndrome widely available, even publicly-funded?

Testing perpetuates discrimination against people living with Down syndrome. It's not really acknowledged by people going through the process, but I think it needs to be mentioned: discrimination must be playing a role in people's calculus when they're making these reproductive decisions. 

If large numbers of people engage in prenatal testing and selective termination, and if that perpetuates an attitude of discrimination towards disabilities, then people living with Down syndrome are going to suffer.

You argue in your book that, when prospective parents find out their child has Down syndrome, they should not opt for termination, but rather, they should welcome that child into their families. Why should they do this? 

All of the evidence we have from the past 20 years or so suggests that bringing a child with Down syndrome into your family is very much like bringing any child into your family. The picture that emerges from the evidence is one of normality. Even though it is a disability, and there are challenges for most families, these are not challenges that diminish wellbeing. Having a child with Down syndrome is not harmful to families.

Also, people with Down syndrome typically enjoy their lives. When you ask people with Down syndrome about their lives, they're very happy, particularly if they're welcomed into their communities and they have the support and the education that they need, the job training and the housing — all of the things that make a life go well.

If you believe that parents should show unconditional love toward their children and that parents should be accepting of their children, if you believe in inclusion and diversity, then choosing to parent a child with Down syndrome is consistent with your values. All of these values that most people would say that they believe in are consistent with bringing a child with Down syndrome into their family. By making that choice, you support that kind of life, that kind of future. It's also a choice that the evidence shows is not going to be detrimental to your wellbeing. So why not make it? That is the case that I'm making in the book.

What are the questions we should be asking ourselves before we decide, individually or as a society, to screen for traits in our future children?

Some of the questions that we ask now are totally legitimate — about the reliability and safety of tests, around people having autonomous choice in the construction of their families. These are all legitimate.

But I think there are larger picture questions that we need to be asking. These have to do with what kind of society we want to be living in in the future. The way we make choices in reproduction has an influence on that future. This is really kind of unacknowledged.

If you use this prenatal technology to choose certain types of children with certain types of traits — if everybody does this — then we ultimately end up living in a certain type of future.

Alternatively, if we parent our children in certain ways and have a goal of raising our children to be a certain way, then we also end up living in a certain type of future.

If our reproductive practices and our childrearing practices are all directed at raising and producing super-children who are able to compete in various ways academically within the capitalist market economy, then what we end up with is a society that is focused on competitiveness. And it may not place an emphasis on values like empathy and connectedness. Or unconditional love for each other, for our children, for our friends and for our relations.

If we really want to live in a different type of society, one that is not so focused on economic growth and competition, then maybe we should consider reorienting the way that we choose our children and reorienting the way that we raise the children that we have.

Some regulators forbid the transfer of an embryo known to have a disabling genetic trait. So it might not always be a decision a family can choose to make.

That's right. Suppose you wanted to implant an embryo with Trisomy 21. (That isn't out of the question — many people adopt children with Down syndrome or this may be your only viable embryo.) The law in the UK as far as I can tell would actually prohibit that. I think that's wrong.

There is a parallel with the abortion law in the UK. The UK abortion law isn't as permissive as the Canadian law. There are stipulated grounds under which you can access abortion. One of them is that you can legitimately have an abortion if the fetus has been diagnosed with a serious disability. 

What that means, though, is that doctors and lawmakers have essentially defined Down syndrome as a serious disability. But it's not a serious disability. If you look at how standard textbooks define it, it's commonly defined as a mild to moderate disability. So this concept of serious disability acts as kind of a cover story or a fig leaf justifying termination. Just like here, selective termination after prenatal diagnosis of Down syndrome is common — it's the most common outcome in the UK when you have a prenatal diagnosis of Down syndrome.

I'm very pro-choice. If anything, I think I think the law in Canada — where an abortion is simply a woman's choice — is better. And I don't think that people should be legally prevented from undergoing selective termination. But there are problems with signalling that Down syndrome is a serious disability.

What is it like to go ahead with a Down's pregnancy, in the face of that bias? 

In the case of my wife and I, family and friends were supportive. But it's not uniformly that way. Just to give an example, after my son was born — he's a second child — my wife got pregnant with our third child. And we were offered prenatal testing. My wife refused because it didn't really matter to us whether the next child had Down syndrome or not. Some of the medical professionals involved in that decision were kind of surprised. They were insistent that she consider prenatal testing. It really seemed like they were saying, 'Why would you want to do that again?' 

Final thoughts?

Prenatal tests offer us the illusion of control. We think we can control who we admit into our families. We think we can screen out certain types of people. But even though you may be able to control to some extent the genetic disabilities in your family, people become disabled in all sorts of other ways too. You might end up with a child who becomes disabled through the childbirth process, or in early infancy, or later on. We are all prone to disability. We are all vulnerable.

So even if we do the screening, our children may surprise us — in positive and negative ways. And disability is just one example. I think we fool ourselves into thinking that we have control over these decisions that we ultimately don't have.

This interview has been condensed and edited. 

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Chris Kaposy. Choosing Down Syndrome: Ethics and New Prenatal Testing Technologies. MIT Press. 2018.

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