Prenatal Screening: “Weeding Out” Down Syndrome

It was near the end of my prenatal exam. I was an older mom, expecting our tenth child, and was not surprised to hear the doctor recommend first trimester prenatal screening. As usual, I politely declined. This time, however, the doctor decided to press the issue, no doubt because of my “advanced maternal age.” “It’s to weed out Down syndrome,” she responded, with an exasperated expression. I felt my own annoyance rise as I pointed out that prenatal testing does nothing to “weed out Down syndrome,” but rather “weeds out” persons with Down syndrome. I spent the rest of the pregnancy avoiding that doctor. There were plenty of other doctors in the practice, none of whom harassed me about the decision to forgo prenatal testing. At 19 weeks, an ultrasound revealed that my daughter’s nasal bone was significantly shorter than usual, a signal that she had Down syndrome. One of the doctors in the practice worked with us to develop a prenatal plan of care for the baby, including a fetal echocardiogram to check for heart anomalies that could cause complications at birth. Otherwise, the pregnancy continued as any other would.  

 

Ironically, the night that I gave birth, the “weed out Down syndrome” doctor was on call. I wondered if this was God’s way of forcing her to care for my daughter with Down syndrome, despite her disapproval. In a stroke of Divine providence, she rotated off duty right before my daughter was born, and the attending physician was the same doctor who helped to craft the prenatal plan of care for my daughter. My daughter is now a thriving and happy 13 year-old, who participates in sports at her Catholic school and is universally beloved. 

 

As it turns out, our experience with a doctor articulating eugenic sentiments and pressuring us to undergo early screening was not unique. In fact, in many ways, our experience with prenatal diagnosis of Down syndrome was far better than average, because we had doctors in our practice who cared about our baby, rather than seeing her as a burden or a tragedy. We had access to prenatal specialists who could not only rule out severe congenital defects, but who would have been capable of treating even the most severe complications. We had friends who had children with Down syndrome, whose children were beautiful, happy and thriving, so it was easy to envision possibilities instead of obstacles for our daughter. We live in a community with a Down syndrome clinic at the local children’s hospital, whose patient care coordinator reached out shortly after birth because she had heard from friends that our daughter was having some difficulty gaining weight. We delivered at a hospital where the neonatologist greeted us after birth, congratulating us for having a beautiful daughter. Still those words from the first prenatal visit haunt me – how many other parents have been encouraged to “weed out” Down syndrome?

Dr. Brian Skotko M.D.,M.P.P., professor at Harvard Medical School and director of the Down Syndrome Center at Massachusetts General Hospital, has spent years researching this very question, He first published a survey on the prenatal experience of families who had children with Down syndrome in 2005.¹ At that time he found, “parents said that the information that they received from their clinicians was oftentimes incomplete, outdated, and sometimes offensive.”² In January 2025, Skotko published updated research on the prenatal experience of families and found that for many the negative aspects of prenatal diagnosis were not only unimproved from earlier decades, but had worsened.³ Skotko’s team found that “57% of parents reported that their clinician inadequately explained Down syndrome after a prenatal diagnosis, causing 84% of parents to experience fear and 93% of parents to experience anxiety.”⁴ Few parents received up to date or helpful resources, while many report feeling pressured to have an abortion.

 

In a separate literature review, Skotko and his team found that as prenatal technology developed, government involvement shifted to supporting access to prenatal tests, with all countries offering prenatal tests.⁵ At the same time, 75% of countries offered government subsidies for abortion in cases of Down syndrome, up from 50% in 1990.⁶ In the UK, for example, abortion is illegal after 24 weeks unless the baby is deemed to be at risk of having Down syndrome or other disabilities.⁷ In the United States, a patchwork of state abortion laws leaves babies with Down syndrome or other handicaps vulnerable to abortion. Although 12 states have banned abortion, all other states have legalized abortion at varying stages that would allow, at the minimum, for prenatal diagnosis followed by abortion.⁸ Moreover, the American College of Obstetricians and Gynecologists recommends that all pregnant women undergo first trimester prenatal screening, regardless of the risk for fetal anomalies.⁹ Women and Infants Hospital in Rhode Island helpfully explains their recommendation for a screening test followed by an ultrasound by describing it as “more effective” and promising that “It will better distinguish affected from unaffected pregnancies, reducing the chance that a Down syndrome pregnancy is missed.”¹⁰ Anecdotally, many families we know reported being harassed by their doctors with repeated phone calls after their child’s diagnosis urging them to schedule their “terminations.”

 

In 2017, CBS featured a story about how Down syndrome was “disappearing” in Iceland, thanks to universal utilization of prenatal testing.¹¹ Writing about this, Georgi Boorman described the use of prenatal testing as “nudgenics,” a kind of soft eugenics.¹² Typically, eugenics has been a tool used by the state, which tests for genetic undesirability and then uses tools at its disposal to eliminate those it deems unfit. The Nazi program Aktion T4, the systematic euthanasia of persons with disabilities that preceded the Holocaust, is a classic example of state-imposed eugenics.¹³

 

Prenatal testing differs from classic eugenics, in so far as the agents of the decision to end the life of the unborn child are the parents themselves. The state professes indifference to the parents’ choice, while applying pressure to “nudge” them to the decision that is best aligned with the state’s interests— prenatal screening, followed by the abortion of babies with Down syndrome or other chromosomal abnormalities. Writing in the AMA Journal of Ethics, Barbara Katz Rothman and Gareth Thomas mull over prenatal screening and conclude it is a form of contemporary eugenics, one that honors the choice of the parents, yet still is predicated on eliminating undesirable persons.¹⁴ Withholding accurate information about the child’s potential for a long and happy life leaves the parents with the impression that this child will suffer, and faces a sad, tragic existence. Even worse, in the name of informed consent, parents are provided with a laundry list of complications of Down syndrome, without also pointing out that while it is extremely rare, almost unheard of, for persons with Down syndrome to experience every single potential complication. No wonder 93% of parents surveyed by Skotko felt anxious!

 

To be clear, prenatal testing can be used to care for children with Down syndrome. My husband and I were able to work with our doctors to make sure the medical staff were prepared for any potential complications during our daughter’s birth. Had we discovered any major heart defect, labor and delivery staff would have been prepared to whisk our daughter away for treatment. So there are good arguments for being able to diagnose disability in utero. But the high rate of abortion after universal prenatal screening in the first trimester suggests that universal prenatal screening is not a neutral act.

 

Indeed in Iceland, which “achieved” a near elimination of Down syndrome, (as proponents euphemistically describe the campaign to ensure no babies with Down syndrome are born), obstetrician Hulda Hjartardottir admitted that “just offering the test is pointing you toward a certain direction.”¹⁵ Aggressively pushing universal prenatal screening before the baby feels real, before the mother sees the baby on ultrasound and feels the baby moving, and while abortion is readily available, is intended to bring about the systematic elimination of persons with Down Syndrome. As fewer persons with Down syndrome are born, it becomes harder for parents presented with a prenatal diagnosis to envision a good life for their son or daughter.

 

This leaves us with the question—how do we reverse course? There are concrete steps that physicians and families can take. Opt for 2nd trimester tests rather than early prenatal screening, which can help plan for caring for disabled babies after birth. Have positive resources on hand, including the names and contact information of doctors who specialize in caring for children with Down syndrome, so parents feel less anxious and helpless. Create local registries of parents of children with Down syndrome who would be willing to share how rich their lives are because of their precious child. Finally, we must be willing to call out universal early prenatal screening as what it is, a tool that is advancing a eugenic agenda that ultimately will leave our society less humane and poorer for the loss of these beautiful souls.