As we acknowledge World Down Syndrome Day this week, we two mothers recall vivid memories of sitting alone in our obstetrician-gynecologists’ offices and experiencing firsthand the push for pregnant women to get early prenatal genetic testing. One of us decided to decline this testing, and one of us decided to proceed, although we both had already decided we would let our babies continue to live out their precious lives no matter what the test revealed.
Alarming to both of us, however, was the similar sales pitch used by the OB/GYN offices to convince us that we needed this test. “You’re definitely going to want the test, right?” “Are you sure you don’t want it? It tests for things like Down syndrome and other rare diseases, and you know, Down syndrome children don’t run as fast, jump as high, or do as well academically. And you’d want to know early, right?”
Every pregnant woman in America knows the drill: sometime in the first trimester, the doctor offers to do “prenatal genetic testing.” With just a few vials of blood, these tests promise to tell new parents about potential genetic problems their child may have, including Down syndrome, cystic fibrosis, and other rare conditions. The pamphlets about the testing promise “peace of mind,” “total confidence,” and “clear answers” — things that would appeal to anyone, but especially to new parents!
Incorrect Tests Lead to Abortion
There’s just one hitch: some of these tests are mostly wrong. In a groundbreaking report published last month, The New York Times revealed that at detecting various rare and serious genetic issues, prenatal genetic screening tests provide incorrect results as often as 83 percent to 91 percent of the time.
Despite this alarming record, prenatal genetic testing is increasingly billed as a routine part of pregnancy care. The absurdly high number of false-positive screening results for various rare genetic disorders not only causes deep emotional harm to new parents, but even more tragically, in some cases motivates doctors and or medical experts to incorrectly use these erroneous results to encourage women to abort their perfectly healthy children.
It is essential for women to understand that these genetic screening tests are exactly just that: a screen. They do not have the capability to definitively diagnose any genetic condition with 100 percent confidence or accuracy. As noted by the Charlotte Lozier Institute, an organization that researches and publishes data regarding abortion-related issues, “too little emphasis is placed on the fact that these tests are merely screening and not diagnostic tests. While the manufacturers recommend that a positive indication on the test should be confirmed with an invasive test such as an amniocentesis, some parents are choosing to abort their unborn children based entirely on these screenings.”
Testing companies provide physicians patient literature that urges parents to test for these potential genetic problems in advance, as this will purportedly allow parents to “prepare themselves.” But all too often, parents feel coerced into aborting a child they have been told will either be unable to survive outside of the womb or have a “lesser quality of life” compared to other children.
According to The Guardian, “Rebecca Price and Patrick Kiely were advised by medical staff to abort their son, Christopher, after two test results in 2019 indicated he had Trisomy 18, also known as Edward’s syndrome… Sadly, when the couple went through with the advised abortion, another test result revealed Christopher did not in fact have Trisomy 18… The high court in Dublin announced that Rebecca Price and Patrick Kiely will receive damages after five consultants from Merrion Fetal Health clinic, the hospital, and a lab admitted negligence.”
How Many Lives Lost?
Although it is difficult to find reliable published data regarding exactly how many prenatal tests are done, one company, Natera, reports that it performed 400,000 tests for a single genetic condition in 2020, according to The New York Times. One study found that four out of every one thousand tested pregnancies ends in abortion because of a “detected fetal anomaly.” Even if the tests were correct, this would be a tragedy.
It is also important to understand that the exact prognosis and outcome for many of the rare genetic conditions tested are often unclear. Numerous studies in neonatal palliative care literature illuminate a clear theme: physicians frequently underestimate the quality of life for children with these relatively rare genetic conditions, whereas parents often describe their experiences with their children as precious and valuable.
Many patients with these rare genetic conditions may even survive much longer than anticipated with appropriate support. These rare conditions, once labeled “terminal,” are now more appropriately described as “life-limiting,” as they are expected to either shorten the life expectancy of the child to various degrees or present various challenges.
Ending a Child’s Life Causes Parents Trauma
Parents who have chosen to continue to carry a child to delivery despite a life-limiting condition frequently report that the time that they have with their little ones, whether minutes or years, were some of the most beautiful and meaningful times of their lives. Parents who, instead, decide to abort their child based on an adverse prenatal genetic diagnosis unfortunately often experience profound emotional and psychological trauma, which is often underrecognized or even ignored by many physicians.
This trauma can take months or even years to resolve, and unlike the grief that accompanies a natural miscarriage or stillbirth, often manifests as psychosomatic disturbance and debilitating guilt. With the availability of perinatal hospice and neonatal palliative care programs all over the country, designed to gently guide families through the care of a child with a life-limiting condition, the added physical and psychological trauma that accompanies abortion for both the parents and the child is avoidable.
The reality is that parents are aborting children because a corrupt testing industry has succeeded in selling the lies that a) every pregnant woman needs this prenatal genetic testing; b) the testing is completely accurate (parents routinely report not being informed that a false positive was possible); and c) if the testing detects an anomaly, abortion is the appropriate response. Many women have even reported being abandoned by their medical provider and discharged from a medical practice after choosing to continue to carry a child with a life-limiting condition. That is horrific.
Honoring Life In All Its Forms
Countless women who have taken these tests and received an adverse screening result for their child, yet chose to continue and not abort their child, found that the screening was wrong, and their child was perfectly healthy. For those whose screening was correct, the child’s life was honored — not violently interrupted — and the parents and family were afforded closure as the child’s life ended naturally, in the arms of loving parents, siblings, and grandparents.
But, tragically, there are many parents who have taken the advice of testing companies and of misguided or corrupt medical professionals, aborting children who deserved to be loved and supported regardless of their diagnosis.
Prenatal testing companies’ false claims have stolen from innumerable parents a lifetime of love and happiness with their beautiful children. It’s time for accountability. We can’t bring back the countless children who were lost at the hands of a corrupt and flawed prenatal testing industry, but we can speak out to protect future victims.