The Atlantic published an article on November 18, 2020 entitled “The Last Children of Down Syndrome”, that has already flown around social media to rave reviews. Here’s some of the new information shared and what it missed was the choice that led to the disappearance of Down syndrome.
Sarah Zhang is the author of the article. She engaged in thorough research for months (possibly years–I cannot recall when she interviewed me for the story, it’s been so long ago). Her efforts show in the depth of her reporting.
Denmark
Zhang begins her story in Denmark, where prenatal testing for Down syndrome has been offered to every pregnant woman since 2004–coincidentally, the year my daughter with Down syndrome was born. The result is the decimation of the next generation of those born with Down syndrome.
In 2011, The Copenhagen Post reported, seemingly gleefully, Denmark “could be a country without a single citizen with Down’s syndrome in the not too distant future.” Nine years later, Zhang’s reporting finds that children with Down syndrome still are being born, but at drastically reduced numbers.
In 2019, only 18 babies were born with Down syndrome in Denmark. If the same birth prevalence experienced in the United States occurred in Denmark, roughly 105 children would be expected to be born.
I’ve written previously about the Eurocat database, which collects total pregnancies expected positive for Down syndrome, how many are aborted, and how many live births occur throughout Western European countries. Below is a screenshot for the most recent information about Denmark, reporting on the years 2011-2018:
The blue line is “total cases,” i.e. all pregnancies Eurocat calculates would be carrying a child with Down syndrome. The orange line is “Termination Of Pregnancy For congenital Anomaly” or “TOPFA”. And, the green line represents live births. These are per 10,000 births. The closeness between the orange line (TOPFA) and the blue line (all cases) supports Zhang’s reporting that 95% of mothers terminate following a prenatal test result for Down syndrome in Denmark.
In 2020, Dr. Brian Skotko and his team of researchers published updated information from the years 2011-2015 on birth prevalence and the reduction rate of live births of children with Down syndrome. “Reduction rate” meaning the number of pregnancies that would have been expected to deliver a live birth, but were ended by abortion. You can see what the reduction rate reported is for Denmark in the percentage in the bar graph:
Public supports are not enough to welcome babies with Down syndrome
Zhang also shares a very telling and concerning point about Denmark:
Denmark is not on its surface particularly hostile to disability. People with Down syndrome are entitled to health care, education, even money for the special shoes that fit their wider, more flexible feet.
Later in the article, Zhang references legislative efforts here in the United States to ban Down syndrome abortions. Several commentators (myself included) critiqued the politicians using Down syndrome to advance their anti-abortion efforts. Critics argued these same elected officials needed to make America more welcoming to people with Down syndrome instead of continuing to allow the chronic underfunding of needed public support programs.
Denmark, however, undermines this critique of Down syndrome abortion bans. Even with all of the public supports provided for people with disabilities in Denmark, almost all expectant mothers choose to abort after a prenatal test.
Morally troubling
To her credit, Zhang does not mirror the disappearance of Down syndrome by not including it in her article. Quite the contrary.
Zhang shares about an outing with Denmark’s Down syndrome support organization’s leader and her family, including her adult son with Down syndrome. Photographs of children and adults with Down syndrome appear throughout the article. Zhang shares an insight gained from speaking with my colleague Stephanie Meredith on how people should not be judged solely on accomplishments, but on whether and how they care for others, like her son Andy did for his younger sister when she was knocked down in a basketball game.
Zhang’s inclusion of images of, stories about, and having actual interactions with people with Down syndrome is commendable. Too often, when people with Down syndrome are the subject, they are not included. (See ACOG’s committee on prenatal testing practice guidelines).
Perhaps Zhang would have made this somewhat controversial observation without the experiences she had with people with Down syndrome and their families, but, no doubt, those informed this daring statement:
[Down syndrome] was one of the first genetic conditions to be routinely screened for in utero, and it remains the most morally troubling because it is among the least severe. It is very much compatible with life–even a long, happy life.
Yet, eugenic abortions become the norm.
I was surprised to learn from Zhang’s article that prenatal genetic testing itself originated in Copenhagen. A mother was a carrier for hemophilia and had lost a baby boy. When she became pregnant again, she wanted to know the sex of her child, since girls have virtually no risk. Her obstetrician performed the first ever amniocentesis and confirmed she was expecting a girl. In the paper the OB co-wrote on the case study, it says:
The determination of the foetel sex and the foetal blood-group would seem to be of value in preventive eugenics, and it is most likely that examination of the cells and perhaps even of other constituents of the amniotic fluid may disclose other genetic properties of the expected child.
(You can read it for yourself here at the bottom of page two). That final paragraph is chilling in its unknowing foreshadowing of how prenatal testing would be used and to what ends.
Indeed, Zhang reports that Denmark began offering prenatal testing for Down syndrome to mothers over the age of 35 in the 1970’s for the express purpose of “saving money–as in, the testing cost was less than that of institutionalizing a child with a disability for life. The stated purpose was ‘to prevent birth of children with severe, lifelong disability.'” An express eugenics policy.
Zhang notes that the stated purpose was changed in 1994 “to offer women a choice.” But, given the 95% termination rate, it appears “choice” is overwhelmingly to terminate.
The choice that is making Down syndrome disappear
As much as Zhang’s article is about prenatal testing for Down syndrome, it is also about the choice most women make after a prenatal test result: abortion.
Zhang attends a Down syndrome support group parent meeting, where many share how they did not have prenatal testing and, hence, they did not have a decision to make prenatally. Several talk of how glad they were not to have the reductive effect of a prenatal test defining who their child would be down to just how many chromosomes he or she had.
She also shares how another mom confided that if she had known prenatally, she would have chosen to abort. Zhang talks to a woman who did abort following a prenatal test. And, Zhang speaks to an IVF developer who now has second thoughts about whether we should be reducing future lives down to just their genetic code.
Throughout her thorough investigation, Zhang wonders why is it that when given a choice, women overwhelmingly choose to abort rather than continue a pregnancy positive for Down syndrome. She talks to parents and a professor who suggest it’s the soft prejudice of the medical community against “disability” that may influence how women are counseled. “Velvet eugenics” is how bioethicist Rosemarie Garland-Thomson has described the subtle effect of the commercialization of reproduction allowing for selecting against disability.
To be sure, Zhang’s reporting on the decisions of individual parents, the way prenatal testing is administered, and the technological developments that increasingly allow for identifying and selecting against disability all have a cumulative effect resulting in the 95% termination rate in Denmark and similarly high termination rates in many other countries. But, the effect of Zhang’s extensive research leaves the impression that one single thing cannot be pointed to as contributing to the disappearance of Down syndrome.
But, then, I saw an option on the Eurocat database that I missed when I screenshot the graph above.
The default setting went to the years 2011-2018 for Denmark. But, the Eurocat database has data for Denmark stretching all the way back to 1980. Here is what you see when you look back across those forty years:
Do you see it?
Again, the blue line is expected pregnancies positive for Down syndrome. The green line is the live births of babies with Down syndrome. And the orange line is TOPFA, selective abortions for Down syndrome.
Follow the lines from 1980 going forward. Except in 1994, the green line is above the orange line; more babies were being born with Down syndrome than aborted. Prenatal testing had been available the whole time, but it was not part of the national health service except for women over age 35.
The lines intersect and TOPFA leaps over the green line when?
2004.
The year my daughter was born.
The year Denmark made the choice to offer prenatal testing to all expectant women.
That was the choice that resulted in a 95% termination rate, a 79% reduction rate, a disappearance of Down syndrome.
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