Is It Illegal to Abort Babies Because of Down's Syndrome
The Last Children of Down Syndrome
Prenatal testing is irresolute who gets born and who doesn't. This is simply the beginning.
Photographs by Julia Sellmann
Every few weeks or and so, Grete Fält-Hansen gets a call from a stranger asking a question for the first time: What is it like to raise a child with Downward syndrome?
Sometimes the caller is a pregnant woman, deciding whether to have an ballgame. Sometimes a hubby and wife are on the line, the 2 of them in agonizing disagreement. One time, Fält-Hansen remembers, it was a couple who had waited for their prenatal screening to come back normal before announcing the pregnancy to friends and family. "We wanted to expect," they'd told their loved ones, "considering if it had Down's syndrome, nosotros would have had an ballgame." They called Fält-Hansen after their daughter was born—with slanted eyes, a flattened nose, and, most unmistakable, the actress copy of chromosome 21 that defines Downwards syndrome. They were agape their friends and family would now think they didn't love their daughter—then heavy are the moral judgments that accompany wanting or not wanting to bring a kid with a inability into the world.
All of these people get in bear upon with Fält-Hansen, a 54-twelvemonth-sometime schoolteacher, because she heads Landsforeningen Downs Syndrom, or the National Down's syndrome Clan, in Denmark, and because she herself has an eighteen-twelvemonth-old son, Karl Emil, with Down syndrome. Karl Emil was diagnosed later on he was born. She remembers how fragile he felt in her artillery and how she worried virtually his health, merely mostly, she remembers, "I thought he was and so cute." Two years after he was born, in 2004, Denmark became i of the beginning countries in the world to offer prenatal Down's syndrome screening to every pregnant woman, regardless of age or other run a risk factors. Virtually all expecting mothers choose to have the test; of those who get a Down syndrome diagnosis, more than than 95 percent choose to abort.
Denmark is not on its surface specially hostile to inability. People with Down syndrome are entitled to health intendance, education, fifty-fifty money for the special shoes that fit their wider, more than flexible feet. If you inquire Danes nigh the syndrome, they're likely to bring up Morten and Peter, ii friends with Down syndrome who starred in pop Tv set programs where they cracked jokes and dissected soccer games. However a gulf seems to divide the publicly expressed attitudes and individual decisions. Since universal screening was introduced, the number of children born with Downwards syndrome has fallen sharply. In 2019, merely 18 were built-in in the entire state. (Nearly 6,000 children with Down syndrome are born in the U.Due south. each yr.)
Fält-Hansen is in the strange position of leading an organization likely to take fewer and fewer new members. The goal of her conversations with expecting parents, she says, is not to sway them confronting ballgame; she fully supports a woman's right to choose. These conversations are meant to fill in the texture of daily life missing both from the well-meaning platitude that "people with Downwardly syndrome are always happy" and from the litany of possible symptoms provided by doctors upon diagnosis: intellectual disability, low muscle tone, heart defects, gastrointestinal defects, allowed disorders, arthritis, obesity, leukemia, dementia. She might explain that, yes, Karl Emil can read. His notebooks are full of verse written in his conscientious, sturdy handwriting. He needed physical and speech therapy when he was young. He loves music—his gold-rimmed glasses are modeled subsequently his favorite Danish pop star's. He gets cranky sometimes, like all teens do.
Ane telephone telephone call might stretch into several; some people even come to meet her son. In the end, some bring together the association with their child. Others, she never hears from over again.
These parents come up to Fält-Hansen considering they are faced with a choice—one fabricated possible past technology that peers at the DNA of unborn children. Down syndrome is oftentimes called the "canary in the coal mine" for selective reproduction. It was 1 of the first genetic conditions to exist 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—fifty-fifty a long, happy life.
The forces of scientific progress are now marching toward ever more than testing to detect e'er more genetic atmospheric condition. Recent advances in genetics provoke anxieties about a future where parents choose what kind of child to have, or not accept. But that hypothetical future is already here. It's been here for an entire generation.
Fält-Hansen says the calls she receives are nigh information, helping parents brand a truly informed decision. But they are also moments of seeking, of asking cardinal questions nearly parenthood. Exercise you ever wonder, I asked her, nearly the families who terminate upwardly choosing an abortion? Exercise yous feel like you failed to prove that your life—and your child's life—is worth choosing? She told me she doesn't think about it this way anymore. Simply in the beginning, she said, she did worry: "What if they don't like my son?"
•••
In Jan, I took a train from Copenhagen due south to the modest town of Vordingborg, where Grete, Karl Emil, and his 30-year-former sis, Ann Katrine Kristensen, met me at the station. The three of them formed a phalanx of nighttime coats waving hello. The weather was typical of January—cold, greyness, blustery—but Karl Emil pulled me over to the ice-cream shop, where he wanted to tell me he knew the employees. His favorite ice-cream flavour, he said, was licorice. "That's very Danish!" I said. Grete and Ann Katrine translated. Then he zagged over to a men'due south wearable shop and struck upward a conversation with the clerk, who had just seen Karl Emil interviewed on a Danish children's plan with his girlfriend, Chloe. "You didn't tell me yous had a girlfriend," the clerk teased. Karl Emil laughed, mischievous and proud.
We sat down at a café, and Grete gave her phone to Karl Emil to decorated himself with while we spoke in English. He took selfies; his mother, sister, and I began to talk nearly Down syndrome and the state's prenatal-screening program. At one point, Grete was reminded of a documentary that had sparked an outcry in Denmark. She reclaimed her telephone to await up the title: Død Over Downs ("Death to Down Syndrome"). When Karl Emil read over her shoulder, his face crumpled. He curled into the corner and refused to look at united states. He had understood, obviously, and the distress was patently on his face.
Grete looked upwards at me: "He reacts considering he can read."
"He must exist enlightened of the debate?" I asked, which felt perverse to even say. So he's aware there are people who don't want people like him to be born? Yes, she said; her family has always been open with him. Equally a kid, he was proud of having Down syndrome. It was i of the things that made him uniquely Karl Emil. Only equally a teenager, he became annoyed and embarrassed. He could tell he was unlike. "He actually asked me, at some point, if it was because of Down's syndrome that he sometimes didn't sympathize things," Grete said. "I just told him honestly: Yes." Every bit he's gotten older, she said, he'due south fabricated his peace with it. This arc felt familiar. Information technology'due south the arc of growing up, in which our self-assuredness every bit young children gets upended in the storms of adolescence, but eventually, hopefully, we come to accept who nosotros are.
The decisions parents brand after prenatal testing are private and individual ones. Just when the decisions so overwhelmingly swing i way—to arrest—information technology does seem to reflect something more: an entire order's judgment nearly the lives of people with Down syndrome. That'southward what I saw reflected in Karl Emil's face up.
Kingdom of denmark is unusual for the universality of its screening program and the comprehensiveness of its data, but the design of high abortion rates subsequently a Down syndrome diagnosis holds true across Western Europe and, to a somewhat lesser extent, in the Us. In wealthy countries, information technology seems to be at one time the best and the worst time for Down's syndrome. Better health care has more than doubled life expectancy. Improve access to instruction means most children with Down's syndrome volition learn to read and write. Few people speak publicly nearly wanting to "eliminate" Downwards syndrome. Yet individual choices are calculation upward to something very shut to that.
In the 1980s, as prenatal screening for Down's syndrome became mutual, the anthropologist Rayna Rapp described the parents on the frontier of reproductive engineering every bit "moral pioneers." Suddenly, a new power was thrust into the hands of ordinary people—the power to make up one's mind what kind of life is worth bringing into the world.
The medical field has also been grappling with its ability to offering this ability. "If no one with Down's syndrome had always existed or ever would exist—is that a terrible affair? I don't know," says Laura Hercher, a genetic counselor and the manager of pupil research at Sarah Lawrence College. If you take the health complications linked to Down syndrome, such as increased likelihood of early on-onset Alzheimer's, leukemia, and middle defects, she told me, "I don't think anyone would argue that those are good things."
But she went on. "If our world didn't have people with special needs and these vulnerabilities," she asked, "would we be missing a role of our humanity?"
•••
Sixty-one years agone, the first known prenatal test for a genetic disorder in the world took place in Copenhagen. The patient was a 27-twelvemonth-old woman who was a carrier for hemophilia, a rare and astringent bleeding disorder that is passed from mothers to sons. She had already given birth to 1 infant boy, who lived for merely 5 hours. The obstetrician who delivered the baby, Fritz Fuchs, told her to come dorsum if she ever became pregnant again. And in 1959, according to the published case study, she did come back, saying she couldn't get through with her pregnancy if she was carrying some other son.
Fuchs had been thinking about what to practise. Along with a cytologist named Povl Riis, he'd been experimenting with using fetal cells floating in the yellow amniotic fluid that fills the womb to determine a baby's sex. A boy would take a 50 percent risk of inheriting hemophilia; a daughter would have well-nigh no risk. But kickoff they needed some amniotic fluid. Fuchs eased a long needle into the woman's abdomen; Riis studied the cells under a microscope. It was a daughter.
The adult female gave birth to a girl a few months later. If the baby had been a boy, though, she was prepared to take an ballgame—which was legal under Danish law at the time on "eugenic grounds" for fetuses at risk for severe mental or physical illness, co-ordinate to Riis and Fuchs's paper describing the case. They acknowledged the possible danger of sticking a needle in the abdomen of a pregnant woman, simply wrote that information technology was justified "because the method seems to exist useful in preventive eugenics."
That word, eugenics, today evokes images that are specific and heinous: forced sterilization of the "feebleminded" in early-20th-century America, which in turn inspired the racial hygiene of the Nazis, who gassed or otherwise killed tens of thousands of people with disabilities, many of them children. But eugenics was once a mainstream scientific pursuit, and eugenicists believed that they were bettering humanity. Kingdom of denmark, likewise, drew inspiration from the U.South., and it passed a sterilization law in 1929. Over the next 21 years, 5,940 people were sterilized in Denmark, the bulk considering they were "mentally retarded." Those who resisted sterilization were threatened with institutionalization.
Eugenics in Denmark never became as systematic and violent as information technology did in Germany, just the policies came out of like underlying goals: improving the health of a nation by preventing the birth of those deemed to be burdens on society. The term eugenics eventually fell out of favor, but in the 1970s, when Kingdom of denmark began offering prenatal testing for Down syndrome to mothers over the age of 35, it was discussed in the context of saving coin—as in, the testing cost was less than that of institutionalizing a child with a inability for life. The stated purpose was "to prevent birth of children with astringent, lifelong disability."
That language too has long since changed; in 1994, the stated purpose of the testing became "to offer women a choice." Activists like Fält-Hansen have too pushed back confronting the subtle and not-so-subtle ways that the medical arrangement encourages women to choose abortion. Some Danish parents told me that doctors automatically assumed they would desire to schedule an abortion, equally if there was actually no other selection. This is no longer the instance, says Puk Sandager, a fetal-medicine specialist at Aarhus Academy Hospital. Ten years ago, doctors—especially older doctors—were more likely to expect parents to terminate, she told me. "And now we exercise not await anything." The National Down Syndrome Association has also worked with doctors to alter the language they use with patients—"probability" instead of "risk," "chromosome aberration" instead of "chromosome fault." And, of course, hospitals at present connect expecting parents with people like Fält-Hansen to have those conversations nigh what information technology's like to raise a kid with Down's syndrome.
Mayhap all of this has had some effect, though information technology'south hard to say. The number of babies born to parents who chose to go on a pregnancy after a prenatal diagnosis of Down syndrome in Kingdom of denmark has ranged from zero to xiii a year since universal screening was introduced. In 2019, there were seven. (Eleven other babies were born to parents who either declined the test or got a false negative, making the total number of babies built-in with Down syndrome final year 18.)
Why so few? "Looking at it from the exterior, a land like Denmark, if you desire to raise a child with Downwards syndrome, this is a skilful environs," says Stina Lou, an anthropologist who has studied how parents make decisions afterwards a prenatal diagnosis of a fetal anomaly. Since 2011, she has embedded in the fetal-medicine unit at Aarhus University Infirmary, i of the largest hospitals in Denmark, where she has shadowed Sandager and other doctors.
Under the 2004 guidelines, all pregnant women in Kingdom of denmark are offered a combined screening in the first trimester, which includes blood tests and an ultrasound. These data points, along with maternal age, are used to calculate the odds of Down's syndrome. The loftier-probability patients are offered a more invasive diagnostic exam using Deoxyribonucleic acid either from the fetal cells floating in the amniotic fluid (amniocentesis) or from placental tissue (chorionic villus sampling). Both require sticking a needle or catheter into the womb and come with a pocket-sized chance of miscarriage. More recently, hospitals have started offer noninvasive prenatal testing, which uses fragments of fetal Deoxyribonucleic acid floating in the mother's blood. That pick has not become popular in Denmark, though, probably because the invasive tests can pick up a suite of genetic disorders in addition to Down syndrome. More diseases ruled out, more peace of mind.
But Lou was interested in the times when the tests did not provide peace of heed, when they in fact provided the opposite. In a study of 21 women who chose ballgame after a prenatal diagnosis of Down syndrome, she found that they had tended to base their decisions on worst-case scenarios. An extra copy of chromosome 21 tin can crusade a variety of symptoms, the severity of which is not known until nascency or even later. Well-nigh people with Down syndrome learn to read and write. Others are nonverbal. Some practice not accept heart defects. Others spend months or even years in and out of the hospital to fix a heart valve. Nigh have healthy digestive systems. Others lack the nerve endings needed to anticipate bowel movements, necessitating more surgeries, possibly fifty-fifty a stoma bag or diapers. The women who chose abortion feared the worst possible outcomes. Some even grieved the possibility of aborting a kid who might have had a mild form of Down syndrome. But in the end, Lou told me, "the uncertainty just becomes too much."
This emphasis on uncertainty came upward when I spoke with David Wasserman, a bioethicist at the U.S. National Institutes of Wellness who, along with his collaborator Adrienne Asch, has written some of the virtually pointed critiques of selective abortion. (Asch died in 2013.) They argued that prenatal testing has the effect of reducing an unborn child to a unmarried aspect—Down syndrome, for example—and making parents judge the child's life on that alone. Wasserman told me he didn't remember that well-nigh parents who make these decisions are seeking perfection. Rather, he said, "there'southward profound chance aversion."
It'southward hard to know for sure whether the people in Lou'south study decided to abort for the reasons they gave or if these were retrospective justifications. But when Lou subsequently interviewed parents who had made the unusual option to continue a pregnancy later a Downward syndrome diagnosis, she institute them more willing to encompass uncertainty.
Parents of children with Down's syndrome accept described to me the initial procedure of mourning the child they idea they would have: the child whom they were going to walk down the alley, who was going to graduate from college, who was going to go president. None of this is guaranteed with any kid, of course, but while most parents get through a slow realignment of expectations over the years, prenatal testing was a rapid plummet into disappointment—all those dreams, however unrealistic, evaporating at one time. And and then the doctors nowadays you with a long list of medical conditions associated with Down syndrome. Think most information technology this way, Karl Emil'due south sis, Ann Katrine, said: "If yous handed any expecting parent a whole list of everything their child could possibly encounter during their entire life span—illnesses and stuff like that—then anyone would be scared."
"Nobody would have a baby," Grete said.
•••
A peculiar effect of Denmark's universal-screening program and high ballgame charge per unit for Down syndrome is that a fair number of babies born with Down syndrome are born to parents who essentially got a simulated negative. Their first-trimester screening results said their odds were very low—so depression that they needed no invasive follow-up testing. They simply went on with what they thought was an ordinary pregnancy. In other words, similar the couple Grete once counseled, these are parents who might have chosen to abort, had they known.
The day after I met Grete, I attended a coming together of the local Copenhagen Down syndrome group. The woman who invited me, Louise Aarsø, had a then-five-year-old daughter with Downwards syndrome, Elea. Aarsø and her husband had made the unusual choice to opt out of screening. Though they support the right to ballgame, they knew they would desire to have the baby either manner. At the coming together, 2 of the 7 other families told me their prenatal screening had suggested extremely depression odds. At birth, they were surprised. A few others said they had chosen to continue the pregnancy despite a high probability for Down syndrome. Ulla Hartmann, whose son Ditlev was xviii, noted that he was born earlier the national screening program began. "We're very thankful we didn't know, because nosotros had two twin boys when I got pregnant with Ditlev and I really don't think nosotros would have been, 'Okay, permit's take this challenge when nosotros have these monkeys upwardly in the curtains,' " she told me. "Simply you abound with the challenge."
Daniel Christensen was one of the parents who had been told the odds of Downwardly syndrome were very low, something like one in 1,500. He and his wife didn't have to make a choice, and when he thinks back on it, he said, "what scares me the nearly is actually how footling nosotros knew about Down syndrome." What would the ground of their choice have been? Their son August is 4 now, with a twin sister, who Christensen half-jokingly said was "most normal." The other parents laughed. "Nobody's normal," he said.
Then the woman to my correct spoke; she asked me not to use her proper noun. She wore a green blouse, and her blond hair was pulled into a ponytail. When we all turned to her, I noticed that she had begun to tear up. "Now I'm moved from all the stories; I'm a little …" She paused to catch her jiff. "My respond is non that cute." The Down syndrome odds for her son, she said, were i in 969.
"Yous remember the exact number?" I asked.
"Aye, I do. I went back to the papers." The probability was low enough that she didn't call back about it after he was born. "On the one mitt I saw the bug. And on the other manus he was perfect." It took 4 months for him to become diagnosed with Down syndrome. He is half dozen now, and he cannot speak. It frustrates him, she said. He fights with his brother and sister. He bites because he cannot express himself. "This has only been so many times, and yous never feel safe." Her experience is not representative of all children with Down's syndrome; lack of impulse command is common, merely violence is not. Her point, though, was that the image of a happy-go-lucky kid then frequently featured in the media is non always representative either. She wouldn't accept chosen this life: "We would take asked for an abortion if we knew."
Another parent chimed in, and the conversation hopscotched to a related topic and then another until it had moved on entirely. At the terminate of the coming together, equally others stood and gathered their coats, I turned to the woman again considering I was still shocked that she was willing to say what she'd said. Her access seemed to violate an unspoken code of motherhood.
Of grade, she said, "it'southward shameful if I say these things." She loves her child, because how can a mother not? "Simply y'all love a person that hits you lot, bites you lot? If yous accept a married man that bites you, you tin can say goodbye … but if you accept a child that hits you, you can't exercise anything. You can't merely say, 'I don't want to be in a relationship.' Because information technology's your child." To have a child is to begin a human relationship that yous cannot sever. It is supposed to be unconditional, which is mayhap what most troubles us about selective abortion—it's an access that the human relationship tin in fact be conditional.
•••
Parenting is a plunge into the unknown and the uncontrollable. It is cute in this fashion, but as well daunting.
In the cold, scientific realm of biology, reproduction begins with a random genetic shuffling—an human action of fate, if you were to be less common cold, more than poetic. The 23 pairs of chromosomes in our cells line up so that the Deoxyribonucleic acid nosotros inherited from our female parent and male parent can be remixed and divided into sets of 23 single chromosomes. Each egg or sperm gets one such set up. In women, this chromosomal division begins, remarkably, when they themselves are fetuses in their female parent's womb. The chromosomes freeze in place for 20, 30, even forty-plus years equally the fetus becomes a baby, a girl, a woman. The cycle finishes only when the egg is fertilized. During the intervening years, the proteins belongings chromosomes together tin can degrade, resulting in eggs with too many or too few chromosomes. This is the biological mechanism backside most cases of Downwards syndrome—95 percent of people born with an extra copy of chromosome 21 inherited it from their mother. And this is why the syndrome is oftentimes, though not always, linked to the age of the female parent.
In the interviews I've conducted, and in interviews Lou and researchers across the U.S. have conducted, the selection of what to practice later on a prenatal examination vicious disproportionately on mothers. There were fathers who aching over the option too, just mothers usually bore most of the brunt. There is a feminist explanation (my body, my choice) and a less feminist i (family is still primarily the domain of women), but it'due south true either mode. And in making these decisions, many of the women seemed to anticipate the judgment they would face up.
Lou told me she had wanted to interview women who chose abortion later a Down syndrome diagnosis because they're a silent majority. They are rarely interviewed in the media, and rarely willing to be interviewed. Danes are quite open most abortion—astonishingly so to my American ears—simply abortions for a fetal anomaly, and particularly Down's syndrome, are different. They still carry a stigma. "I think it'due south because we every bit a gild similar to retrieve of ourselves equally inclusive," Lou said. "We are a rich club, and nosotros think it's of import that different types of people should exist here." And for some of the women who end upwards choosing abortion, "their own self-understanding is a little shaken, because they have to accept they aren't the kind of person like they thought," she said. They were not the blazon of person who would choose to take a child with a disability.
For the women in Lou's report, ending a pregnancy afterward a prenatal diagnosis was very different from ending an unwanted pregnancy. These were almost all wanted pregnancies, in some cases very much wanted pregnancies following long struggles with infertility. The determination to abort was non taken lightly. Ane Danish woman I'll telephone call "L" told me how terrible it was to experience her baby inside her once she'd fabricated the decision to stop. In the infirmary bed, she began sobbing so hard, the staff had difficulty sedating her. The depth of her emotions surprised her, considering she was so sure of her conclusion. The abortion was two years ago, and she doesn't recall about information technology much anymore. But recounting information technology on the phone, she began crying once again.
She was disappointed to detect so lilliputian in the media most the experiences of women like her. "It felt correct for me, and I take no regrets at all," she told me, but it besides feels similar "you're doing something incorrect." L is a filmmaker, and she wanted to make a documentary about choosing abortion after a Down syndrome diagnosis. She fifty-fifty thought she would share her own story. But she hadn't been able to notice a couple willing to exist in this documentary, and she wasn't set to put herself out at that place alone.
When Rayna Rapp, the anthropologist who coined the term moral pioneers, interviewed parents undergoing prenatal testing in New York in the 1980s and '90s, she noticed a certain preoccupation amongst certain women. Her subjects represented a reasonably diverse slice of the metropolis, simply heart-class white women especially seemed fixated on the idea of "selfishness." The women she interviewed were amongst the first in their families to forgo homemaking for paid work; they had non just jobs just careers that were central to their identity. With nativity control, they were having fewer children and having them afterward. They had more reproductive autonomy than women had ever had in human being history. (Rapp herself came to this inquiry after having an abortion because of Down's syndrome when she became significant as a 36-yr-old professor.) "Medical engineering science transforms their 'choices' on an individual level, allowing them, like their male person partners, to imagine voluntary limits to their commitments to their children," Rapp wrote in her volume Testing Women, Testing the Fetus.
But exercising those "voluntary limits" on motherhood—choosing not to have a kid with a disability out of fright for how it might affect one's career, for example—becomes judged as "selfishness." Medical technology tin offer women a choice, but it does not instantly transform the order effectually them. It does not dismantle the expectation that women are the primary caregivers or erase the ideal of a good mother equally i who places no limits on her devotion to her children.
The centrality of choice to feminism also brings information technology into uncomfortable disharmonize with the inability-rights motion. Anti-abortion-rights activists in the U.Southward. have seized on this to introduce bills banning selective abortion for Down syndrome in several states. Feminist disability scholars have attempted to resolve the conflict by arguing that the pick is not a real selection at all. "The determination to arrest a fetus with a disability even because it 'just seems also difficult' must be respected," Marsha Saxton, the director of research at the World Institute on Disability, wrote in 1998. But Saxton calls information technology a pick made "under duress," arguing that a woman faced with this decision is still constrained today—by popular misconceptions that brand life with a inability out to be worse than it actually is and by a club that is hostile to people with disabilities.
And when fewer people with disabilities are built-in, it becomes harder for the ones who are born to live a good life, argues Rosemarie Garland-Thomson, a bioethicist and professor emerita at Emory Academy. Fewer people with disabilities means fewer services, fewer therapies, fewer resource. Merely she also recognizes how this logic pins the entire weight of an inclusive society on private women.
was introduced in 2004, the number of children in the country built-in with the syndrome has fallen sharply. In 2019, it was just 18. (Julia Sellmann)
No wonder, so, that "choice" can feel like a burden. In one modest study of women in the U.S. who chose ballgame after a diagnosis of a fetal anomaly, 2-thirds said they'd hoped—or even prayed—for a miscarriage instead. It's not that they wanted their husbands, their doctors, or their lawmakers to tell them what to do, simply they recognized that choice comes with responsibleness and invites judgment. "I have guilt for not being the kind of person who could parent this detail blazon of special need," said one woman in the study. "Guilt, guilt, guilt."
The introduction of a choice reshapes the terrain on which we all stand up. To opt out of testing is to become someone who chose to opt out. To test and end a pregnancy because of Down syndrome is to become someone who chose non to take a child with a disability. To exam and continue the pregnancy after a Down syndrome diagnosis is to become someone who chose to have a child with a disability. Each option puts yous behind ane demarcating line or some other. There is no neutral ground, except perhaps in hoping that the test comes back negative and you never have to choose what's adjacent.
What kind of option is this, if what you hope is to not have to choose at all?
•••
Down syndrome is unlikely to ever disappear from the world completely. As women await longer to have children, the incidence of pregnancies with an extra copy of chromosome 21 is going upwardly. Prenatal testing tin can likewise in rare cases be wrong, and some parents will choose non to abort or not to test at all. Others will not have access to abortion.
In the United States—which has no national wellness-care system, no government mandate to offer prenatal screening—the best estimate for the termination charge per unit after a diagnosis of Down syndrome is 67 per centum. But that number conceals stark differences within the state. One report found higher rates of termination in the Westward and Northeast and amid mothers who are highly educated. "On the Upper East Side of Manhattan, it's going to be completely different than in Alabama," said Laura Hercher, the genetic counselor.
These differences worry Hercher. If simply the wealthy can afford to routinely screen out certain genetic weather condition, so those conditions can become proxies of class. They can go, in other words, other people's issues. Hercher worries about an empathy gap in a world where the well-off feel insulated from sickness and inability.
For those with the money, the possibilities of genetic selection are expanding. The leading border is preimplantation genetic testing (PGT) of embryos created through in vitro fertilization, which altogether can cost tens of thousands of dollars. Labs now offer testing for a menu of genetic weather condition—most of them rare and astringent conditions such equally Tay-Sachs disease, cystic fibrosis, and phenylketonuria—allowing parents to select healthy embryos for implantation in the womb. Scientists accept also started trying to understand more common weather condition that are influenced past hundreds or even thousands of genes: diabetes, heart disease, loftier cholesterol, cancer, and—much more controversially—mental affliction and autism. In tardily 2018, Genomic Prediction, a company in New Jersey, began offering to screen embryos for chance of hundreds of conditions, including schizophrenia and intellectual inability, though it has since quietly backtracked on the latter. The one test customers keep asking for, the company's chief scientific officer told me, is for autism. The science isn't there yet, but the need is.
The politics of prenatal testing for Down syndrome and abortion are currently yoked together by necessity: The simply intervention offered for a prenatal test that finds Down syndrome is an abortion. Simply modern reproduction is opening up more than means for parents to choose what kind of child to have. PGT is 1 case. Sperm banks, also, now offer detailed donor profiles delineating center color, hair color, education; they also screen donors for genetic disorders. Several parents have sued sperm banks after discovering that their donor may take undesirable genes, in cases where their children developed conditions such as autism or a degenerative nerve affliction. In September, the Georgia Supreme Court ruled that one such case, in which a sperm donor had hidden his history of mental affliction, could move forward. The "deceptive trade practices" of a sperm bank that misrepresented its donor-screening procedure, the court ruled, could "essentially amount to ordinary consumer fraud."
Garland-Thomson calls this commercialization of reproduction "velvet eugenics"—velvet for the soft, subtle way information technology encourages the eradication of disability. Like the Velvet Revolution from which she takes the term, it's accomplished without overt violence. Only information technology likewise takes on another connotation as human reproduction becomes more and more subject to consumer pick: velvet, equally in quality, high-quotient, premium-tier. Wouldn't you desire only the best for your baby—one you lot're already spending tens of thousands of dollars on IVF to conceive? "Information technology turns people into products," Garland-Thomson says.
•••
None of this suggests that testing should exist entirely abandoned. Near parents choosing genetic testing are seeking to spare their children real physical suffering. Tay-Sachs affliction, for case, is caused by mutations in the HEXA factor, which causes the destruction of neurons in the encephalon and spinal cord. At about three to six months old, babies brainstorm losing motor skills, then their vision and hearing. They develop seizures and paralysis. Virtually do not alive by babyhood. There is no cure.
In the world of genetic testing, Tay-Sachs is a success story. It has been nearly eliminated through a combination of prenatal testing of fetuses; preimplantation testing of embryos; and, in the Ashkenazi Jewish population, where the mutation is especially prevalent, carrier screening to discourage marriages between people who might together laissez passer on the mutation. The flip side of this success is that having a baby with the illness is no longer simple misfortune because cipher could accept been washed. Information technology tin be seen instead as a failure of personal responsibleness.
Fertility doctors take spoken to me passionately nigh expanding access to IVF for parents who are fertile just who might use embryo screening to prevent passing on serious diseases. In a globe where IVF becomes less expensive and less hard on a woman'southward body, this might very well become the responsible thing to practice. And if you're already going through all this to screen for one disease, why non avail yourself of the whole menu of tests? The hypothetical that Karl Emil'due south sister imagined, in which a child's every hazard is laid out, feels closer than ever. How do you choose between ane embryo with a slightly elevated hazard of schizophrenia and another with a moderate take a chance of breast cancer?
Non surprisingly, those advocating for preimplantation genetic testing adopt to keep the chat focused on monogenic diseases, where single gene mutations have severe health effects. Talk of minimizing the risk of conditions similar diabetes and mental illness—which are besides heavily influenced by environment—rapidly turns to designer babies. "Why do we want to get there?" says David Sable, a former IVF doc who is now a venture capitalist specializing in life sciences. "Start with the nearly scientifically straightforward, the monogenic diseases—cystic fibrosis, sickle cell anemia, hemophilia—where y'all could define very specifically what the benefit is."
What about Downward syndrome, so, I asked, which can be much less severe than those diseases but is routinely screened for anyway? His answer surprised me, considering that he has spent much of his career working with labs that count chromosomes: "The concept of counting chromosomes equally a definitive indicator of the truth—I think we're going to look back on that and say, 'Oh my God, we were and then misguided.' " Consider the sex chromosomes, he said. "We've locked ourselves into this male person-female binary that we enforced with XX and XY." But it'due south not nearly so great. Babies born XX tin can have male reproductive organs; those built-in XY can have female person reproductive organs. And others can be born with an unusual number of sexual activity chromosomes like X, XXY, XYY, XXYY, XXXX, the furnishings of which range widely in severity. Some might never know there'due south annihilation unusual in their chromosomes at all.
When Rayna Rapp was researching prenatal testing back in the '80s and '90s, she came across multiple sets of parents who chose to abort a fetus with a sex-chromosome anomaly out of fear that it could lead to homosexuality—never mind that there is no known link. They also worried that a boy who didn't conform to XY wouldn't exist masculine enough. Reading virtually their anxieties xxx years afterwards, I could sense how much the ground had moved under our feet. Of class, some parents might still have the aforementioned fears, simply today the boundaries of "normal" for gender and sexuality encompass much more than than the narrow band of three decades ago. A child who is neither XX nor XY tin can fit into today's earth much more easily than in a rigidly gender-binary one.
Both sex-chromosome anomalies and Down syndrome were early on targets of prenatal testing—not because they are the nigh unsafe conditions but considering they were the easiest to test for. Information technology'south just counting chromosomes. As science moves past this relatively rudimentary technique, Sable mused, "the term Down's syndrome is probably going to go abroad at some betoken, because we may detect that having that 3rd 21 chromosome maybe does not deport a anticipated level of suffering or contradistinct function." Indeed, most pregnancies with a tertiary copy of chromosome 21 stop equally miscarriages. But about xx pct survive to nativity, and the people who are born have a wide range of intellectual disabilities and physical ailments. How tin an extra chromosome 21 exist incompatible with life in some cases and in other cases consequence in a boy, similar one I met, who tin can read and write and perform wicked juggling tricks with his diabolo? Conspicuously, something more than just an extra chromosome is going on.
As genetic testing has go more widespread, it has revealed just how many other genetic anomalies many of us live with—non simply extra or missing chromosomes, merely whole chunks of chromosome getting deleted, chunks duplicated, chunks stuck onto a different chromosome altogether, mutations that should exist mortiferous but that show up in the healthy adult in front of yous. Every person carries a fix of mutations unique to them. This is why new and rare genetic diseases are so hard to diagnose—if you compare a person'south Dna with a reference genome, you come upwardly with hundreds of thousands of differences, about of them utterly irrelevant to the affliction. What, so, is normal? Genetic testing, equally a medical service, is used to enforce the boundaries of "normal" by screening out the anomalous, simply seeing all the anomalies that are uniform with life might actually aggrandize our agreement of normal. "It's expanded mine," Sable told me.
Sable offered this upwardly as a full general ascertainment. He didn't think he was qualified to speculate on what this meant for the time to come of Down's syndrome screening, but I plant this conversation about genetics unexpectedly resonant with something parents had told me. David Perry, a writer in Minnesota whose 13-yr-old son has Downwards syndrome, said he disliked how people with Down's syndrome are portrayed as angelic and cute; he establish it flattening and dehumanizing. He pointed instead to the manner the neurodiversity movement has worked to bring autism and ADHD into the realm of normal neurological variation. "We need more kinds of normal," some other father, Johannes Dybkjær Andersson, a musician and artistic director in Copenhagen, said. "That'southward a adept thing, when people testify up in our lives"—every bit his girl, Emerge, did vi years ago—"and they are just normal in a totally dissimilar mode." Her brain processes the world differently than his does. She is unfiltered and open up. Many parents have told me how this quality tin be awkward or confusing at times, but it tin can also break the stifling bounds of social propriety.
Stephanie Meredith, the director of the National Heart for Prenatal and Postnatal Resources at the University of Kentucky, told me of the time her twenty-yr-old son saw his sister collide with another player on the basketball court. She hit the ground so hard that an audible crack went through the gym. Earlier Meredith could react, her son had already leapt from the bleachers and picked his sister upward. "He wasn't worried nigh the rules; he wasn't worried about decorum. It was simply responding and taking care of her," Meredith told me. She had recently been asked a simple but probing question: What was she most proud of nigh her son that was not an achievement or a milestone? The incident on the basketball game court was one that came to mind. "It doesn't have to do with accomplishment," she said. "Information technology has to practice with caring about another man being."
That question had stayed with Meredith—and it stayed with me—because of how subtly even so powerfully it reframes what parents should value in their children: not grades or basketball trophies or higher-acceptance letters or any of the things parents usually brag well-nigh. Past doing and so, it opens the door to a earth less obsessed with achievement. Meredith pointed out that Downwards syndrome is defined and diagnosed by a medical system fabricated up of people who have to exist highly successful to go there, who probable base part of their identity on their intelligence. This is the arrangement giving parents the tools to decide what kind of children to have. Might it exist biased on the question of whose lives have value?
•••
When Mary Wasserman gave birth to her son, Michael, in 1961, kids with Down's syndrome in America were still routinely sent to land institutions. She remembers the doc announcing, "Information technology'due south a mongoloid idiot"—the term used earlier chromosome counting became common—and telling her "it" should go to the state institution right abroad. Wasserman had volunteered for a calendar week at such an institution in high school, and she would never forget the sights, the sounds, the smells. The children were soiled, uncared for, unnurtured. In disobedience of her doctor, she took Michael home.
The early years were not easy for Wasserman, who was a divorced female parent for much of Michael's childhood. She worked to support them both. There weren't actually any formal twenty-four hour period cares then, and the women who ran informal ones out of their homes didn't want Michael. "The other mothers were not comfy," ane of them told her after his first week. Others rejected him outright. She hired private babysitters, merely Michael didn't have playmates. It wasn't until he was 8, when a school for kids with disabilities opened nearby, that Michael went to school for the kickoff fourth dimension.
Michael is 59 now. The life of a child built-in with Downward syndrome today is very different. Land institutions closed downward subsequently exposés of the unsanitary and cruel atmospheric condition that Wasserman had glimpsed every bit a loftier-school student. After children with disabilities become home from the hospital today, they have access to a bevy of voice communication, physical, and occupational therapies from the government—unremarkably at no cost to families. Public schools are required to provide equal access to education for kids with disabilities. In 1990, the Americans With Disabilities Act prohibited discrimination in employment, public transportation, day cares, and other businesses. Inclusion has fabricated people with disabilities a visible and normal role of gild; instead of being hidden away in institutions, they live among everyone else. Thanks to the activism of parents like Wasserman, all of these changes have taken place in her son's lifetime.
Does she wish Michael had had the opportunities that kids have now? "Well," she says, "I think perhaps in some ways it was easier for us." Of course the therapies would have helped Michael. But there'south more force per unit area on kids and parents today. She wasn't shuttling Michael to appointments or fighting with the school to go him included in full general classes or helping him apply to the higher programs that accept now proliferated for students with intellectual disabilities. "It was less stressful for u.s.a. than it is today," she says. Raising a child with a disability has become a lot more intensive—not unlike raising any child.
I can't count how many times, in the course of reporting this story, people remarked to me, "You know, people with Down syndrome piece of work and go to college now!" This is an important corrective to the low expectations that persist and a poignant reminder of how a transforming society has transformed the lives of people with Downwards syndrome. But it besides does not capture the full range of experiences, particularly for people whose disabilities are more serious and those whose families practice not have money and connections. Jobs and higher are achievements worth celebrating—like any kid's milestones—but I've wondered why nosotros so ofttimes need to point to achievements for evidence that the lives of people with Down syndrome are meaningful.
When I had asked Grete Fält-Hansen what information technology was like to open up her life to parents trying to decide what to do after a prenatal diagnosis of Down's syndrome, I suppose I was asking her what it was like to open up her life to the judgment of those parents—and likewise of me, a journalist, who was here asking the same questions. As she told me, she had worried at commencement that people might not like her son. But she understands now how unlike each family unit'due south circumstances tin can exist and how difficult the choice can be. "I feel sad virtually thinking about pregnant women and the fathers, that they are met with this choice. It'south most impossible," she said. "Therefore, I don't judge them."
Karl Emil had grown bored while nosotros talked in English. He tugged on Grete'south hair and smiled sheepishly to remind us that he was still there, that the stakes of our conversation were very real and very human.
This article appears in the Dec 2020 print edition. It was first published online on November eighteen, 2020.
Source: https://www.theatlantic.com/magazine/archive/2020/12/the-last-children-of-down-syndrome/616928/
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