Prenatal screening shouldn’t equal a death sentence

Down syndrome

What is the purpose of prenatal testing? Is it to let parents be informed of any potential health issues, or is it so that preborn children with disabilities can be eliminated before they even have a chance to live? One mother recently wrote in the Washington Post about her concern that it’s the latter — that screening for Down syndrome exists only to eliminate a group of people

In 2011, the newest feat in prenatal testing was introduced: the NIPT (Non Invasive Prenatal Test). This DNA test can, with reasonable accuracy, detect Down syndrome in early pregnancy from a single drop of blood taken from the mother. Hailed by medical professionals as the holy grail in prenatal testing, the NIPT has quickly spread across the globe.

Recent research in Britain indicates that introducing the NIPT leads to a higher uptake of screening. With termination rates varying around the world from about 67 percent in the United States to an average of 92 percent in Europe, this will promote even more intensive de-selection of fetuses with Down syndrome, which in turn will negatively affect their position in society.

… With DNA tests called MaterniT21 being popularly referred to as the “Down test,” the primary aim of testing needs no further explanation. I detest the fear that is cultivated by medical professionals, the medical industry and politicians about giving birth to a child with Down syndrome. Down syndrome does not cause human suffering. The real danger lies in voices that claim our children need to be tested before we can decide who is worthy of life. Women are not incubators of socially preferable descendants.

While everything written here by the author, Renate Lindeman, is true, the screening isn’t to blame. Our society is.

As Lindeman points out, women report having a negative experience when receiving a diagnosis of Down syndrome by a 2 to 1 margin. 1 in 4 women report being pressured to have an abortion. Women are frequently given outdated, inaccurate information. What Lindeman didn’t point out is that prenatal blood tests are not very accurate at all:

How many women undergo these tests, being told that they’re accurate, and then summarily have an abortion based on the results? Mark Leach, another parent of a child with Down syndrome, has worked tirelessly to expose the problems with these tests. Despite being touted as the “holy grail” of prenatal testing, these screenings are just that: screenings. They are not diagnostic, yet that is how they are sold to women.

Non-invasive prenatal screenings (NIPS), such as MaterniT21, Harmony, Progenity, etc., continue to frequently give women inaccurate information. Because these tests are screenings and not diagnostic, women are supposed to be referred to further genetic counseling if they receive a positive result — but that doesn’t happen nearly enough. To this day, the tests are not regulated by the FDA, and a sting operation found that some of the labs were reporting that blood tests from women who weren’t pregnant at all were having baby girls without Down syndrome.

NIPS have been blasted for their lack of accuracy and transparency by the International Society for Prenatal Diagnosis, the the American College of OB/GYNs, and the New England Journal of Medicine. The laboratories are frequently criticized for advertising their tests are giving a reliable positive or negative result, for not being transparent, for their alarming lack of quality control, and for the unacceptable lack of regulatory oversight.

These tests, though, are routinely recommended to women. Not only are they recommended on a regular basis, they are sold as being just as accurate as an amniocentesis. Expectant mothers are made to think that this is the “safe” option, the way they can make sure their baby is all right without having to risk an amnio. And when the results come back positive, they’re then pressured to immediately have an abortion. Given that, it’s easy to see prenatal testing as serving no other purpose than to allow women to have abortions if their child has a disability.

That’s not a fair assessment, however, as getting a Down syndrome diagnosis in advance can have a lot of medical benefits. Babies with Down syndrome, for example, are at higher risk for miscarriage and stillbirth, so if a parent knows in advance, their doctor can then monitor the baby with non-stress tests and ultrasounds to ensure that the placenta isn’t failing and the baby isn’t in distress. It also allows doctors to know to monitor the baby more closely, checking for things like heart defects. Those things are consistently left out of the conversation when it comes to the pro-life movement and prenatal testing, though.

We have to stop blaming prenatal testing for the abortions of babies with Down syndrome.

So what can we blame for the high abortion rate instead? We can blame Today show segments where expectant parents are congratulated live on the air because their baby is “safe” from Down syndrome. We can blame the doctors who give parents the diagnosis in such a grim, negative way. We can blame the people who had abortions and insist that it was “best” for their baby with Down syndrome. We can blame politicians who call for the mandatory abortion of babies with Down syndrome, or figureheads who say not aborting is immoral. We can blame the Dr. Phil Show for advocating for the mercy killing of people with disabilities.

It’s our society that needs to change, not the prenatal testing.

There are ways to make improvements, though. Both North Dakota and Ohio have banned abortions based on Down syndrome. Laws in multiple states, like Massachusetts, have mandated that doctors give women up-to-date, accurate information. The doctors are also required to put women in touch with a program that links new and expectant mothers to parents who have children with Down syndrome. The Congratulations Project helps bring some positivity to what can too often be a negative experience… so that parents will get a congratulations instead of just “I’m sorry.” We can make sure to educate these new mothers on the true facts about raising a child with Down syndrome — that people with Down syndrome are overwhelmingly happy with their lives and with who they are, and that their parents report being happier and having a more positive outlook on life. We can support organizations like the Down Syndrome Diagnosis Network, made up of real Down syndrome moms whose mission is to support new mothers with accurate information and real-life accounts of life with Down syndrome. And we can all work on being more accepting of people with disabilities.

The high rate of abortion for babies with Down syndrome is abhorrent. But we can’t keep blaming prenatal testing for it. If we want these babies to live, then we need to look in the mirror… because it’s us that need to change.

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