Happy World Down Syndrome Day, 2024. It’s amazing how far we’ve come in supporting and accepting individuals living with Down syndrome since 1958 when Dr. Jerome Lejeune (now Venerable Jerome Lejeune) first discovered the genetic cause and ended the superstitions that surrounded it. But, in spite of growing acceptance and inclusion, we still have far to go to end the holocaust of individuals prenatally diagnosed with Trisomy 21.
Amniocentesis was used for the first time in the early 1950s to prenatally diagnose a medical condition in a fetus called Rh incompatibility, or Rhesus disease. The development of that technology quickly accelerated, and by the middle of the decade, it could be used to determine the sex of a child. Around the same time a different technology called karyotyping was being developed that made it possible to count chromosomes. This is how Lejeune was able to count the chromosomes of a young man with Down syndrome and discover that he had an extra copy of chromosome 21. With that discovery, we learned what caused Down syndrome, or what came to be called Trisomy 21, and a new field of genetics was launched that searched for variations in chromosomes that might be the cause of some diseases and disabilities.
Bringing together the development of amniocentesis and Lejeune’s discovery gave rise to a new industry focused on the development of prenatal diagnostic technologies. It was a short journey from the realization that fetal cells in amniotic fluid could be karyotyped to prenatally diagnose genetic conditions, like Down syndrome, to the use of that information to end the lives of countless babies. In 1971 in the United States, the Supreme Court wrongly decided Roe v. Wade and gave federal protection for a “right to abortion.” The rest is history.
Researchers have estimated that the population of individuals living with Down syndrome in the United States is about 30 percent less than it would be if there was no prenatal diagnosis and abortion. Countries like Iceland and Denmark have not hidden their desire to eliminate Down syndrome from their population. Lejeune lamented that his discovery had made this possible, and he committed his life to the protection of innocent human life that he saw being targeted in the womb for destruction.
We have to help everyone see beauty in the authentic diversity of the human family . . .
Amniocentesis is usually offered between the fifteenth and twentieth weeks of pregnancy and is done by inserting a long needle into the amniotic sac to draw out the amniotic fluid for analysis. The procedure also carries up to a one-percent risk of miscarriage. In 2011, a new technology was developed that can be used to screen for a few different genetic anomalies as early as the tenth week of pregnancy—and all it requires is a simple draw of the mother’s blood. There is no invasive needle, and there is no risk of miscarriage. This technology is called either non-invasive prenatal screening (NIPS), or non-invasive prenatal testing (NIPT). The first makes it clearer that this test is not definitive. It is a screening, and not a diagnostic test. In other words, a positive result from NIPS should always be confirmed with an invasive test—either amniocentesis or chorionic villus sampling (CVS). Both carry a risk of miscarriage. CVS is performed by taking a sample of placental tissue, and it can be done as early as ten weeks into the pregnancy.
Acknowledging with gratitude all of our past achievements, this is what I’m thinking about this World Down Syndrome Day, 2024.
Since July 2022 when the Supreme Court overturned Roe v. Wade, some states have passed laws to restrict access to abortion to as early as six weeks into a pregnancy. Others have decided on a twelve, eighteen, or twenty-two-week ban. The impact on prenatal testing and pregnancy “decisions” is clear. These new state laws have thrown abortion advocates and nervous parents into a panic. A panic is never good. It can cause bad decisions to be made.
Some women complain that these laws are “compelling” them to make life or death decisions for their pregnancy based on a positive result from a non-invasive prenatal screening test—without the recommended confirmation from an invasive test. Some who find themselves past the cutoff date for an abortion are driving hours from their home to another less restrictive state to kill their child based upon the inconclusive results of a screening test. Since amniocentesis cannot be done prior to fifteen weeks, the opportunity for confirmation is well past a twelve-week ban. CVS can be done as early as ten weeks, but the turn-around for results can take up to two weeks. Some women are requesting ultrasound anatomy scans at ten weeks (typically done at twenty weeks) at which point it is impossible for that procedure to give any conclusive determination of an anatomical “defect” in the child.
As previously mentioned, Denmark (where abortion is only legal up to twelve weeks) has declared their intent to be Down syndrome-free by 2030. Their health ministry revised their prenatal screening guidelines in 2004 from recommending prenatal screening tests for moms over thirty-five to include all pregnant women. The number of Down syndrome births there were reduced to half their historic number by 2007. In 2019, there were only eighteen babies with Down syndrome born in Denmark. Women are not compelled by the government to abort after a positive prenatal test for Down syndrome, but the social pressure to do so is tremendous.
To give an indication of how desirous women, and perhaps their spouses, are to find out the genetic status of their babies, the global prenatal testing market was valued at $15.5 billion in 2022 and is projected to increase by an annual growth rate of about 10.2 percent to $40.9 billion by 2032. That’s alarming.
In the U.S., the American College of Obstetricians and Gynecologists (ACOG) is fueling this market by recommending prenatal screening for all pregnant women. Women report varying experiences with the advice doctors and genetic counselors give them after a positive prenatal diagnosis. Sadly, what we might expect is the reality. That is, the most common advice women receive from their healthcare professionals is encouragement to end the pregnancy. So, families in the U.S. are under similar pressure to abort as their counterparts in Iceland, Denmark, and some other countries.
The scenario this creates evokes horror among the defenders of life, but it should also evoke compassion for the women caught in the quandary created by the medical profession, along with the abortion and prenatal testing industries. Companies that develop prenatal tests are riding a cash cow that must be fed by customers continuing to purchase their tests—that’s the way they keep investors investing in their growth. Testing is also supported by professional associations like ACOG that universally recommend prenatal testing to pregnant women. Many in the medical profession are stuck in a medical model of disability that says if we can’t fix it, we will eliminate it, and, of course, the abortion industry is all too willing to accommodate by providing their death-dealing, satanic procedures.
The Supreme Court’s decision to roll back Roe was absolutely the right one from every legal and moral perspective. Down syndrome and other disability advocates, now have to work harder than ever to evangelize a culture that is told it should reject an “imperfect” life. The stakes are high. We have to help everyone see beauty in the authentic diversity of the human family—all created in God’s magnificent image.
Venerable Jerome Lejeune, pray for us!