I read with bone-chilling despair “The Last Child of Down Syndrome” by Sarah Zhang in the December issue of The Atlantic magazine.
The title alone conjured images of P.D. James’s novel, “The Children of Men,” which was made into a film, “Children of Men.” If you are unfamiliar with this story, I highly recommend it.
It’s a dystopian story that takes place in 2027 about a world on the brink of the end of civilization. Women for some reason have become infertile, and, consequently, humanity is facing extinction. A single woman is found who has miraculously become pregnant and the film revolves around protecting her to save the future of the human race.
Unlike “The Children of Men,” Zhang’s report on the near-extinction of the Down syndrome (DS) people in Denmark isn’t dystopian at all. It’s cruel and real, and spreading to a country near you. While dystopian storytelling has rendered civilization extinct due to women’s infertility, prenatal genetic testing has rendered a particular kind of child extinct by snuffing out their lives before they are even born.
A scientific breakthrough occurred when the Human Genome Project was completed, providing us with a map of the human DNA sequence. This project began in 1990 and was completed in 2003. Once completed, this map gave us a “complete genetic blueprint for building a human being.”
The DNA sequence code of an individual could be mapped, looking at each individual chromosome for any abnormalities in hopes of better understanding diseases as well as treatments. DS, also known as Trisomy 21, is the most common chromosomal anomaly affecting humans. We inherit 23 chromosomes from each parent, for a total of 46, but in people with DS, they end up with three instead of two chromosomes on chromosome 21. Through prenatal genetic testing, DS is now able to be diagnosed before birth.
In 2004, the Danish government, taking advantage of this discovery, made prenatal genetic screening available to every pregnant woman, regardless of her age or any particular risk factors. There is a noticeable shift from tests and technologies being used without any medical indication for their use.
With DS, there is no therapy or cure, so I often call prenatal genetic screening, “search and destroy.” It’s one thing to take a test to find an illness for which there is a treatment, but a wholly different thing to be testing to find things where no treatment exists, or in this case, the so-called treatment is termination.
Prenatal genetic testing occurs not only during pregnancy, but often on embryos created in the laboratory. This step of assisted reproduction is to be certain that the embryos the parents want are transferred into the uterus in order to have a child of one’s choosing.
These are often referred to as “designer babies” because they are designed and chosen based on desirable characteristics (boys over girls) or are NOT selected because of undesirable outcomes such as DS.
The recent completion of the DNA sequence of human chromosome 21 has provided the first look at the 225 genes that are candidates for involvement in DS. A broad functional classification of these genes, their expression data and evolutionary conservation, and comparison with the gene content of the major mouse models of Down syndrome, suggest how the chromosome sequence may help in understanding the complex phenotype.
DS is the most common of the genetic anomalies, affecting 1 in 700 live births in the United States.
Since the Danish began testing pregnant women in 2004, the number of pregnancies in which DS was detected and then aborted are staggering. Sadly, the majority of parents in Denmark have chosen to terminate the pregnancy when DS is suspected. Zhang reports that in 2019, there were only seven children born in Denmark with DS.
She adds that “eleven other babies were born to parents who either declined the test or got a false negative, making the total number of babies born with DS last year 18.”
Countries in the UK report a 30 percent decrease in the number of children born with DS. Groups such as Don’t Screen Us Out are calling for a “halt” to these “search and destroy” tests. Then, countries including Iceland unabashedly claim to have eliminated all of DS, as if these people are something to be eliminated!
In the United States, it’s difficult to get figures that are current. One study from 2012 saw a mean termination rate of 67 percent. Of course, in America, the debate over abortion muddies discussions over the competing issues of disability rights and a woman’s right to choose.
It seems we haven’t learned our lessons from the early eugenics movement that was focused on “improving the health of a nation” by not producing burdens on society that would drain resources. While the language then—calling the disabled and mentally ill feebleminded and degenerates—sounds quite cold and harsh, the end result today with our rhetoric of choice and compassion, is the same: the extinction of beautiful, lovely, human beings entitled to the same dignity as any of us.
First published by The Epoch Times
- Jennifer Lahl, MA, BSN, RN, is founder and president of The Center for Bioethics and Culture Network. Lahl couples her 25 years of experience as a pediatric critical care nurse, a hospital administrator, and a senior-level nursing manager with a deep passion to speak for those who have no voice. Lahl’s writings have appeared in various publications including Cambridge University Press, the San Francisco Chronicle, the Dallas Morning News, and the American Journal of Bioethics. As a field expert, she is routinely interviewed on radio and television including ABC, CBS, PBS, and NPR. She is also called upon to speak alongside lawmakers and members of the scientific community, even being invited to speak to members of the European Parliament in Brussels to address issues of egg trafficking; she has three times addressed the United Nations during the Commission on the Status of Women on egg and womb trafficking.