Is It Wrong to End a Down Syndrome Pregnancy?
On right vs. left and morality vs. law
Earlier this month, YouTuber Jesse Ridgeway went viral for tweeting about his wife’s abortion. The couple were expecting a baby, but genetic testing indicated the fetus had trisomy-21, or Down syndrome. They terminated the pregnancy, he wrote, in a difficult decision they did not make lightly.
The internet exploded.
The Ridgeways were called Satan-worshiping eugenicists who killed their own child. They were compared to Hitler. Everyone from Meghan McCain to House Speaker Mike Johnson branded them “evil.”
In reality, most people who get a fetal diagnosis of Down syndrome do exactly as the Ridgeways did — roughly 74% of Down syndrome pregnancies are terminated. And pregnancies where the fetus has Down syndrome see astounding miscarriage and stillbirth rates, which some research puts at roughly 50%, but others list as high as 80%. The Ridgeways listed this high miscarriage risk as one reason for their decision. All of this — the miscarriage rate, the abortion rate — adds up to a reality in which the overwhelming majority of fetuses with Down syndrome are never born.
To me, the legal framework around this is simple: Women should get to choose if they bring pregnancies to term or not. I’m comfortable with more restrictions attaching at the point of fetal viability, but before that, women should be the ones to decide whether or not to stay pregnant for whatever reason — including if they find out they are carrying a fetus with Down syndrome. No other legal structure fairly balances the interests of the pregnant woman and the fetus. There are all kinds of reasons women may have abortions that I think are questionable or even immoral, but there’s just no good way to regulate people’s motivations, and big downsides to doing so.
One of my growing frustrations with American political discourse, though, is the retreat to the law as a stopping point of the conversation. This happens on both the left and the right, but because I am a person on the political left, I find it particularly frustrating when discussing issues among fellow political travelers. And questions like the morality — not the legality — of terminating pregnancies for genetic defects or the related and growing field of choosing embryos for their genetic assets going under-discussed on the left, and we cede more difficult moral debates to the right. I wish we had more of a collective interest not just in discussing what should be legal, but what is good and right, or how to think about goodness and rightness.
One of the best pieces I’ve ever read about the moral, ethical, and social complications of Down syndrome terminations is this one in the Atlantic, which mostly looks at Nordic countries, where 95% of of Down syndrome pregnancies are terminated. The Down syndrome debate is particularly interesting to me because it is difficult. The religious right has a clear position: Abortion is wrong more or less always, and so ending Down syndrome pregnancies is wrong. The left generally, again, falls back on the law: Women should be legally allowed to end their pregnancies for whatever reasons they see fit, including chromosomal abnormalities or birth defects. And of course I agree with that.
But much of the rest of the conversation either feels like emotional blackmail (claiming that if you support the right to terminate a Down syndrome pregnancy you are saying that people with Down syndrome shouldn’t exist) or some bloodless attempt at moral math (ticking off a list of Down syndrome complications) or flat-out disgust toward people with disabilities (arguing that of course anyone in their right mind would end a Down syndrome pregnancy / that disabled people are a burden and disabled children ruin their parents’ and siblings’ lives ) or a kind of gauzy glorification of Down syndrome (posting photos of adorable children and adults with Down’s as if to claim that Down’s kids are actually a kind of extra-cute version of a person and any concerns are silly).
In reality, nearly all of us believe that there are some situations in which it is more moral to not being a person into the world — such is the case with genetic disorders that guarantee not just that an infant will die, but that their short time on earth will be excruciatingly painful. But I don’t think this is as simple as reproductive “choice” being the governing principle here: I also personally believe that some emerging reproductive technologies are dangerously immoral and should not be legal — giving people the ability to maximize for intelligence, height, hair or eye color, and so on. Genetic testing for serious health risks strikes me as one thing; genetic maximizing is a very different other.
Down syndrome falls into a more complex middle. Many people with Down syndrome live happy lives; many will also never be able to live independently, a fact that does not necessarily invalidate personal happiness. It’s been disturbing to see so many people respond to the Ridgeways story by arguing that it’s best, actually, to end Down syndrome pregnancies in all cases; the universe of human experience just doesn’t and shouldn’t work according to such clear-and-fast rules. But it’s also been jaw-dropping to see such vitriol thrown at a couple who was simply honest about a choice that most people in their situation make. It was almost as though the objection wasn’t the act itself, but the lack of shame about it.
And maybe that’s the actual stance many Americans hold: The choice to end a Down syndrome pregnancy should be legal, but it should be shrouded in shame and kept quiet.
This topic is always a fraught one for those of us who are both feminists and supporters of the disability rights movement, in part because the more recent iteration of social justice movements have had demands for moral clarity at their core. And to me, the stance that a woman should have the legal right to decide for herself whether or not to continue a pregnancy is among the clearest of moral positions. But I can also see how the conditions under which women tend to end pregnancies can signal more complex morals and norms. For many years, women in various parts of the world were much more likely to abort female fetuses than male ones. I still believe that women should have a legal right to abortion. But I believe that misogyny is morally wrong, and the mass aborting of female fetuses was a symptom of a culture-wide moral disease. For some in the disability rights movement, the fact that most people choose to abort fetuses with Down syndrome is a similar symptom of a moral failure.
(Just for the record, or in case you’re curious, I don’t believe that ending a Down syndrome pregnancy is morally wrong, but I would like to see more people feel they have a full set of options — and options are certainly constrained if you do not feel confident that a child with Down syndrome will be well cared-for as an adult).
It is true that the US is an extremely difficult place to raise a child with disabilities, or to be a person with disabilities. There are not enough resources. People with disabilities, especially serious ones that mean they are not verbal or cannot easily communicate their experiences or needs, are at significantly higher risk than the general population for abuse, poverty, and neglect. Couples staring at a genetic test and staring down a future where they are dead and their grown child is in the world without the care he or she needs to function are making the kind of calculus for which there is no possible calculator, no solvable equation.
It is also true, though, that abortion rates for fetuses with Down syndrome are even higher in many nations where support for people with disabilities are far more robust (in Iceland, Denmark, and other extremely generous social welfare states, upwards of 90% of Down syndrome pregnancies are terminated). It is true that humans have gone to great lengths to make ourselves healthier and to avoid the kinds of conditions and complications that are not just different but decrease any individual’s ability to participate in society, decrease their ability to experience the fullness of life, and increase their suffering. I’ve heard some in the disability rights movement argue that the problems are not disabilities themselves, but an ableist society that does not create accommodations and other ways for people with disabilities to thrive. And the second part is true — we should have greater accommodations and ways for people with disabilities to thrive. But we also do, and should, go to great lengths to avoid disabilities from occurring in the first place, from telling pregnant women to take folic acid supplements to spending millions on medical research to help paralyzed people walk. None of this indicates that people with disabilities are less worthy as people. Many Down syndrome fetuses don’t survive until birth because the condition really does create serious physical problems, and people with Down syndrome tend to live shorter lives that are rife with medical problems. None of this means people with Down syndrome are less worthy as people.
But I would imagine that most of us, apart from a small minority who hold very particular religious views, have some circumstances under which we would end a pregnancy because of fetal abnormality. So the question is not really one of whether to draw a line, but where to draw it.
Which of course gets us back to the legalism: Given all of these complexities, these lines should be drawn liberally, giving individuals maximal freedoms to make their own moral calculations. But liberals should resist the urge to cede all other moral grappling to the right.
xx Jill
This is a personal topic for me because our youngest, currently 11, has Down Syndrome. One of the reasons we live in Israel now, actually, is because the range of services and options available to him over the next few years and for sure as he gets older are more robust here than they would be in the US. This is especially important because the life expectancy of people born with DS has more than doubled in the last generation or two and is now around 60. It is not easy - certainly his presence redefined our family in profound ways that we never really imagined before he came along - but we never even considered aborting the pregnancy. That is, I'm sure, partially because we are Orthodox Jews, but I don't think we just saw it just in terms of religious obligation.
I agree with you that people should have maximal freedom to make fraught personal decisions. To us, it seemed like the Ridgeways heard a prognosis that was VERY heavily weighted towards the potential physical negatives, and their post reflected those concerns (perhaps the prognosis they heard from their medical team reflected their own fears and concerns). We recognize and are grateful that our son is relatively generally healthy and high-functioning, though developmentally disadvantaged in ways that do require interventions and help. There are Down Syndrome cases that result in much more physical disability, but also plenty of cases where that is not the case.
My sense from experience is that there is a tendency in the medical field to start couples facing a Down Syndrome diagnosis with the worst-case scenarios. While that is certainly part of an informed decision, it is not the only part. I don't mean this as a criticism of the Ridgeways, per se, but it does seem like they made a choice that was less than fully-informed, and became part of the atmosphere that is reinforcing the less-informed choices others will make. That may say more about society in general.
The challenge for prospective parents is that Downs has a spectrum. I don’t know how much they can tell about where a child will fall on that spectrum, but I know a child who is near the worst case end and I would not wish her misery on anyone.