Brian Lehrer: It's the Brian Lehrer show on WNYC. Good morning again everyone. Prenatal screening for Down syndrome and other genetic disorders sometimes puts disability rights advocates in conflict with feminist movements, and it has others asking, "Where is the line?" There's a long and challenging cover story about this in The Atlantic now that focuses on Denmark as an example of the leading edge of this. In 2004, Denmark became one of the first countries in the world to offer every pregnant woman prenatal Down syndrome screening, regardless of their age or risk factors.

By 2019, last year, only seven children with Down syndrome were born in Denmark. What's happening in that country, and what's happening in this country and around the world, and how much of a moral dilemma does it or should it pose for anyone? With me now is Sarah Zhang staff writer for The Atlantic. Her cover story for the magazine is called The Last Children of Down Syndrome. Sarah, thank you for coming on. Welcome to WNYC.

Sarah Zhang: Thank you. It's good to talk to you.

Brian: Before we open up the phones to our listeners who've had or considered abortions for fetal abnormalities, and before we get into the story of Denmark, which might sound remote to some people, was there a central moral dilemma that you were trying to explore by writing this article?

Sarah: Yes, exactly. I came at this as a writer who writes about genetics a lot, and I'm often writing about the latest and newest things in genetic testing and gene editing. As writers who write about the news, we can get caught up in what's the newest and the latest. I think all these things about prenatal testing, we ask a lot of fundamental questions about, "Why am I becoming a parent? What do I want for my children? What kind of society do we think I'm bringing my children in?" I think these are actually questions we've actually been asking ourselves all this time for the past 20 or 30 years since prenatal screening for Down syndrome first became common.

Instead of looking at the newest technology, I wanted to take a look back a little bit and see what has happened when not just one person has had access to this technology but millions of people. What we're seeing really across the Western world is that the majority of parents who are in this situation end up choosing an abortion. At the same time, the lives of people at [unintelligible 00:02:42] who are getting better and better. With better healthcare and better access to education, they are learning to read and write, they are living two to four times as long as they were decades ago. It's in some ways the worst and best time for Down syndrome right now.

Brian: Is there a conflict that you see between too what we might think of as progressive movements, the movement for women's choice, and the movement for disability rights?

Sarah: Yes. One of the things that we want to do is to think about what does it mean to have this choice? I think in feminism where abortion rights are forefront, it's always thought of as the woman gets to choose what they will like with their pregnancies, their body, their choice. I think disability activists would counter that, "Is this really a choice, or is this a choice we live in a world where society does not value people who are disabled, and how much of this is a free choice, and what happens when there is no top-down program telling women that they shouldn't have children who are disabled, or who have Down syndrome yet these individual choices are adding up to something very close to that?"

Brian: Denmark is the leading edge of this?

Sarah: Yes. As you were saying, Denmark is one of the first countries to start universal screening for all women who are pregnant. You said earlier there were seven children born in 2019. There's seven children born after a positive test for prenatal screening. The full number is actually 18 because sometimes you can get a false negative or sometimes some families don't choose not to take a test. These are actually all quite rare.

Denmark is also obviously a really progressive country. It has a really strong social safety net. Children with Down syndrome have access to healthcare. Of course, they have newer national healthcare system, which is one of the reasons we have such specific numbers. In the US it's actually really hard to get specific numbers on how many children with Down syndrome were born or terminated after prenatal testing. Yet at the same time, despite this really strong social safety net, you're still seeing so many women making the decision to abort. It's like at over 95%.

Brian: How did public health officials and bioethicists in that country frame the decision to offer prenatal Down syndrome screening to every pregnant woman, and is it any different than what goes on here?

Sarah: Yes, it's framed as a choice. It's framed as women are given a choice of whether they want to take the test, and then they're given a choice of what to do once they get the results. I will say we all have experience of being a patient with a doctor. We often listen to what our doctor tells us to do because we know that our doctor knows more than we do. It's very easy to go along with what everyone else does or what your doctor is saying. Even when your doctor is saying-- When your doctor offers a test, it's implicitly saying this is a test worth taking. Just the very offer of it is sometimes not entirely neutral.

In the United States, our healthcare system can really be very patchwork and very person to person, hospital to hospital, doctor to doctor. I think most of your listeners who have gone through this experience have probably been offered some prenatal testing themselves. It's not as uniform. There are different tests that are available. Some of them can be done earlier in pregnancy than others, but it's still pretty common just to get offered this because it's seen as a thing that everyone does.

Brian: Listeners, help us report this story, and especially women or families who are either raising a child with Down syndrome or elected not to. Help us report this story, if you would be willing. How much of a dilemma was it to make whichever decision you eventually came to? How do you feel about prenatal screening and genetic testing? Generally, we understand this is a sensitive issue, so we appreciate your coming forward with your thoughts and your feelings and your experiences about this from whatever standpoint to help other people figure out how to think about it themselves with no right answer.

Our lines are open for a few calls, (646) 435-7280, or maybe you've even read the cover story in the Atlantic this month, which is getting widely discussed. The author Sarah Zhang with us, (646) 435-7280. Does this generalize to other fetal abnormalities? Your article does focus largely on Down syndrome.

Sarah: Yes, that's right. That's a great question. I think Down syndrome has often been called the canary in the coal mine for the very reason that it was one of the first conditions to be screened. The reason it is one of the first is actually just simply because it's one of the most common and one of the easiest. Down syndrome is defined by having an extra third copy of chromosome 21. Back in the '80s, what you could do is you would actually just literally count the chromosomes in a cell. Today we have all these ways of actually sequencing an unborn baby's DNA, but you couldn't do that back 20 or 30 years ago. Down syndrome wasn't necessarily chosen because it is the most severe or the most deadly or most dangerous condition, but chosen because it was simply the easiest to screen for.

I've been really interested because I've been reporting on new technologies for screening that not just make it you can screen it earlier in the pregnancy, but actually, that's happening with embryos that are created through IVF. This is called pre-implantation genetic testing. Currently, if you go through IVF, it's possible to screen for really hundreds of rare genetic conditions. Some of them really quite severe and quite deadly. Tay-Sachs is a good example. That's something where a child born with Tay-Sachs won't live for more than a few years and there is no cure. On the other hand, there are more hard to define things that are being screened for.

There's a company called Genomic Prediction that is screening for something called polygenic risk scores. What this means is that they're looking, for example, at heart disease risk, or cancer risk, risk of schizophrenia. In that case, you can't say like this one gene means that your child will have this disease or not. What they have to give you is just a risk score. I think parents often go into genetic testing wanting to get some answer, but often what you're getting is a real sense of uncertainty.

Actually, this is so much with Down syndrome as well, even though it's really easy to diagnose because you can just look for that extra chromosome 21, it can encompass a really, really wide range of actual possibilities. It's possible that your child with Down syndrome could grow up to be able to read and write, play music, got to school, work, they might have to live in a group home, they might not be able to live independently, but they can have really pretty long and happy and fulfilling lives. Some others might have heart defects where they need heart surgery when they're very young or be in and out of a hospital, some might be nonverbal.

There's a really wide range of how severe Down syndrome can be. From conversations I've had with women who've gone through this and researchers who've studied women who have gone through this, this uncertainty is actually one of the big things that comes up. One anthropologist I talked to, Stina Lou in Denmark, she had actually followed several couples home who had made both this decision to terminate or not to terminate. She said that those who had decided to end a pregnancy after diagnosis of Down syndrome, they tended to fixate on the worst-case scenario. They thought about the worst thing that could possibly happen, and in some cases, they even mourned the possibility of having a child who had a milder form of Down syndrome. Whereas those who decided to keep the baby, they tended to think about the best-case scenario and the

easier cases to manage.

I think that gets a little bit at how we make these decisions and how we as humans and individuals with each of our own personalities, idiosyncrasies, how do we think about this when there's so much uncertainty about new an outcome, what do we weigh, and what we think are most important?

Brian: Let's take a phone call. Lindsay, in Englewood, you're on WNYC. Hi, Lindsay.

Lindsay: Hi, I'm sorry, my two-month-old is being opinionated in the background right now. I wanted to share with my pregnancy with my daughter, who we all can see here. On my 20-week ultrasound, there were several abnormalities and the doctor and the ultrasound tech was really pushing me to get the amniocentesis to test for all the genetic abnormalities that they can scan for.

I decided not to because the risk of miscarriage with that test seemed higher to me than necessary for the fact that I wanted to have my child pretty much either way, but I did want to be prepared to know what I was going to be dealing with. I did elect for the NIPT, which is a noninvasive prenatal test because I didn't want to be armed with the knowledge of like, "How am I going to be dealing with hospital visits? Am I going to be dealing with a lot in the beginning because I do have another child, and I need to figure out how I'm going to manage that?" I just wanted to share what I went through and what I had to decide. It didn't make anything less stressful. It was still stressful, but I thought it was interesting how much I was getting pushed into a pretty invasive procedure for my daughter.

Brian: Interesting.

Lindsay: She's fine. She's got a couple of things we're dealing with, but nothing major. I'm really glad that I made the decisions that I did.

Brian: Do I hear you correctly that you wanted to know not because you would have considered an abortion but because you wanted to know what you would be faced with upon birth?

Lindsay: Exactly. If it was going to be a life-threatening disorder, I think I would have considered an abortion, but Down syndrome isn't always life-threatening. In most cases, it's not life-threatening, so I wouldn't have aborted just for Down syndrome.

Brian: Thank you so much for your call, Lindsay. Let's go to Nick in Westchester. Nick, you're on WNYC. Hi, there.

Nick: Hey, Brian. Thanks for taking my call and thanks for covering issues like this. I admire your show, but this is one of the reasons, you get into areas that others don't touch on. I am 67, one of six children. My next younger brother has Down's. He's healthy, just had his 67th birthday for a month. We are Irish twins, the same age. I've been following this since the Dark Age of the '50s when my parents were fierce advocates for the rights of what were then called the mentally retarded, now the intellectually disabled.

I wrap this very much in as being I am pro-choice, but it has always been an extremely complicated and difficult discussion for me in this digital argumentative attitude we have about pro-life, pro-choice, but what an extremely complicated issue it is. In the last 15 years, the one aspect of this regarding being around people with Down's is you have no idea how different life is for a child with Down's now. Not only just that my parents had to fight to keep my brother hidden from the world because that's what they're being advised by their doctors, but also the developmental capability in terms of their language skills, their ability to operate in the world, their ability to have productive jobs, compared to my brother, who was clearly as capable but just didn't have the resources, I just can't explain what extraordinary advances have been made in this area.

Whenever I'm in that situation, which has been a couple of times where I've known people who are carrying a child with Down's, I just make it so clear what an extremely amazing opportunity these children will have. Now, I also know what a price a family pays raising a disabled child, but it is not an easy choice. I'm so glad that your author there has written the article. I just want you to know I have a 67-year-old brother who's still healthy and is a central loving element in our family who taught us all how to be affectionate with each other.

Brian: Nick, thank you for your story, and obviously, for your love of your brother and for the complexity of your thought because you also still come down on the side of choice in terms of where the law should get involved, it sounds like, right?

Nick: My mother was a fierce Catholic, and she used to stand outside the church arguing with the priests when he would make this his pro-life sermons and saying to them, "If you are going to be pro-life," as she was, "You need, as a church and as a society, make a commitment to take care of the children after they're born." Now, she was talking about children from Newark in the 1960s, who had really bleak prospects, but she's also speaking about our society has a responsibility towards these children.

Brian: Thank you very much, Nick. We appreciate your call. Deseret in Park Slope, you're on WNYC. Hi, Deseret, thanks for calling again.

Deseret: Hi, thank you. I think my issue is with the premise of the article on the conversation because I feel like we're having a conversation about termination of pregnancies and abortion and the whole conversation is about the child and not about the woman, which for me, in my feminist upbringing, abortion is about a woman making a decision whether or not to carry a pregnancy to term, regardless of the reason. There are all kinds of reasons that a woman might choose to have an abortion that other people would disagree with, but the overwhelming majority of the world, women do not have access to genetic testing. They just have a baby and the baby is whatever the baby is, or they don't.

Brian: Sarah, you want to talk to Deseret?

Sarah: Yes. Now, I'm really glad you brought that up because I think the idea of choice is interesting to me because choice also comes with some responsibility. I think in the women I talked to who made this choice and talking to researchers who talk to women who make this choice, I think this speaks to all of the pressures that are on women. The competing pressures that can be on a woman or society that love them even when they make the choice, and they even think that it is the right choice for them to terminate. They often feel very guilty about it and feel they can't really talk about their choice.

Deseret: How can they not feel guilty when people respond to them in the way--? This entire conversation is built up to make people feel guilty.

Sarah: I think saying that people feel guilty is not the same thing as saying that people should feel guilty. One of the things I found really lacking and one reason I wanted to write this story is because I feel there's so many stories in the media about women who chose to have a child, and how that was a good decision, and how they want other people to make that decision, but you'd witness a real lack of voices of people who chose to have an abortion even though that is actually the vast majority of women.

One of the women I talked to, she was actually a filmmaker, and she wanted to make a film with women making this decision. She had had an abortion herself and she just hadn't been able to find someone who's willing to go in public about this.

Brian: Let's go to a caller who is going to do exactly that. Deseret, thank you so much for putting that important spin on this conversation. Kate in Bridgeville, Connecticut, is that where you are Bridgeville? You're on WNYC, hello.

Kate: Can you hear me?

Brian: I can hear you.

Kate: Okay. Yes. I had had several miscarriages, so this decision was very, very hard for me because I didn't even know to take the genetic test. Then I ended up taking it because I was worried again that I might miscarry and ended up getting very poor numbers. It was very, very hard for me to make the decision, but I ended up because I had another child and I was also taking care of parents and doing all things. I just felt that it was not going to be something that we could do as a family that I would be affecting not only this child's life and my life and my husband's life, but many more people within our family, and so we ended up making the decision to abort, which was very, very, very difficult.

Brian: In retrospect, are you glad you did under the circumstances? I mean, glad, do you feel like you made the right choice?

Kate: Yes, now I know. Well, I was glad, that I had the choice. The knowledge was very helpful for me. I also had had a long time to think about the miscarriages that I was thinking that, at least in my mind, I was trying to think that maybe these were not good pregnancies, so helping me get through the fact that I had miscarried. I tried to look at it the same way because at the time I was very pregnant, whereas those miscarriages people did not know that I had miscarried and [inaudible 00:21:41] many people it was very obvious that I was pregnant and that I was very far along. We kept it private because it is private. That's a decision your family has to make.

Brian: Did you face a lot of judgment and guilt from those around you?

Kate: Well, no one really knew except for my immediate family. I didn't get that in the community that I'm in. I'm sure I would've gotten a lot of backlash because it's a very pro-life community. To be very honest, I'm pretty pro-life, so it was a very [inaudible 00:22:24] decision, but it was something that I did with a lot of guilt, yes, a lot of guilty.

Brian: Kate, thank you very much. We're almost out of time, Sarah, and I want to touch two relatively big things, but we're going to have to do them briefly. By the way, that of course was a caller from Ridgefield, Connecticut. We had a typo there with the B at the beginning, there was no such thing as Bridgefield, I don't think. I'm still thinking about Deseret's call, and whether the bottom line message of your very long and in-depth article doesn't come off more as you should feel guilty, and almost that it's a form of genocide that is being added up to by a lot of individual decisions since the article's title is even The Last Children of Down Syndrome.

You do frame it in the history of eugenics, and obviously, there have been horrific hateful histories of eugenics, including, even well into the 20th century, black indigenous and Latinx people being forcibly sterilized., and there's the Nazi examples, and everything else. This person by person adding up to an elimination of a kind of human being, and what we think morally about the term genetics, does it-- I mean, about the term eugenics, forgive me. Even if the point of the article is not to make people feel guilty, do you think that's the effect, and how do you feel about that?

Sarah: No, I hear about Deseret's comment and what you're saying, and I'm glad you framed it this way as it's like the buildup of the individual decisions because I think that's maybe the conflict I'm really getting at is that I think we would all like to live in a world, for the most part, where we are in charge of our lives, or we get to choose what we want in our lives, but I think maybe the question I'm asking, and I don't particularly have an answer, is that is this emphasis on an individual choice, is that in some ways incompatible with a world where a society--? We're not talking about the individual level on a society level where we take care of everyone regardless of their ability regardless of what "worth" it is. Is the conflict actually at the level of the individual versus society?

Brian: The last thing is you write that if only the wealthy can afford to routinely screen out certain genetic conditions, then those conditions can become proxies of class. The implications of that are huge, right?

Sarah: Yes, exactly. I think about this a lot because the kind of a newer genetic screenings are very, very expensive with IVF. They might be tens of thousands of dollars. In a world where the wealthy can feel like they can insulate themselves from genetic disease, it's no longer a case of fortune or luck that this happens, but rather, maybe it feels like a problem of personal responsibility if you end up with a child with a genetic disorder. I think that can really shift how we think about disease and disability. That is very worrying to me.

Brian: Sarah Zhang, staff writer for the Atlantic, her December cover story, which would print out at about 35 pages, I didn't print it, but that's what my app told me, it would print that, is The Last Children of Down Syndrome. Thank you so much for your end up looking for sharing it with us.

Sarah: Thank you.

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