A Brave, New, Down Syndrome Free World

In September 2013, Austin Ruse, president of the Catholic Human Rights and Family Institute (C-FAM), wrote a poignant letter to subscribers entitled, “You Can Smell the Devil Breath.” It concerned persons with Down syndrome (DS).  He lamented that up to 90% of unborn children with DS were aborted. Ruse believed there was only one possible explanation for this appalling truth. These children were being killed simply because “the devil wants them dead.” He called them “messengers sent from God to teach us about love,” and noted that they “are happy and joyful people and so loving that it would knock your socks off. They love unconditionally.” Of course, he concluded, “The devil hates that. He hates that the most.”

Four years later, it remains easy to believe there are diabolical forces at work. Many recently published reports sound the alarm regarding the non-invasive prenatal screening testing (NIPT) programs being implemented by governments world-wide. These screening tests, euphemistically marketed under the names ‘Harmony’, ‘Tranquility’ and ‘MaterniT21’, could cause the entire population of children with Down syndrome to be exterminated through abortion.

In Search of a Cure

Ironically, the prenatal testing that has acquired such a sinister purpose was originally designed by a man who is on the path to sainthood. Servant of God, Dr. Jerome Lejeune (1926-1994), discovered the genetic cause of Down Syndrome in 1959. Although the syndrome was first described in 1866 by John Langston Down, the cause remained a mystery.   It was a common misconception that DS was a result of syphilis, resulting in the stigmatization of those affected. Dr. Lejeune’s daughter, Clara Lejeune, described the societal attitude towards these individuals, then called “mongoloids”, in her biography of her father, Life is a Blessing (2000):

The disease [syphilis] was disgraceful, and the mothers were presumed to be at fault. Those poor little children, so ugly and retarded, too!  It is better to cross the street when you meet one; it might be contagious! Certain people, though, think that it is hereditary. But decent folks don’t like these mongoloids, and their parents hide them. (15)

When he discovered the true cause of the disorder, the presence of a trisomy, or third copy, of chromosome 21, Lejeune rejoiced. “What was important to him was restoring the dignity of those who [were] ill and of their families.” (16). His goal was to discover medical treatments to be applied in utero and possibly lead to a cure. Unfortunately, abortion became legal in France before he could complete his work.

Lejeune soon became “a helpless witness of the reversal of [his] …discovery, [for now] the technology was in place for eliminating “undesirable specimens” before birth. [Thus, his] discovery was diverted from [its] original objective. (46)

The children he so desperately wanted to protect now had a target on their backs.

98.6% Certain

However, a problem with these early screening methods was the limitation of their reliability. At best, they could correctly predict the presence of Down syndrome with only 80% accuracy. To resolve the remaining 20% uncertainty, diagnostic testing involving amniocentesis was necessary.  Since that procedure has a slight risk of causing a miscarriage, many women hesitated to confirm the screening results (NDSS.org).

The revolution in screening testing began in 2011 when noninvasive prenatal screening tests (NIPT) became available. “These tests involve blood being taken from the expectant mother as early as 10 weeks of gestation. It relies on the detection of cell-free DNA that circulates between the fetus and the expectant mother. According to the latest research, this blood test can detect up to 98.6% of fetuses with trisomy 21 [Down syndrome].   The turnaround time for the test is about 8-10 days.” (ndss.org)

Thus, with NIPT, a mother can find out earlier and with greater accuracy whether her child has Down syndrome without the need to risk amniocentesis. As the National Down Syndrome Society (NDSS) points out, these earlier test results can give the parents the advantage of planning ahead for the birth of the child, so as to be prepared for the child’s special needs. Or, perhaps, they’d prefer to arrange for adoption to a family willing to take in a Down’s child. (NDSS.org)

Sadly, it also allows for an even earlier termination of the pregnancy.

The Slippery Slope

In many European countries, screening for DS as well as other chromosomal disorders is a routine part of their national health care plans, available to their citizens at little or no cost (EUROCAT, “Special Report: Prenatal Screening Policies in Europe,” 2010). With NIPT manufacturers promising faster and more accurate results, it did not take long for government leaders to take advantage and expand their existing prenatal testing programs.

But some are starting to notice that the ease with which the testing is administered serves to downplay its consequences.

In January, Dr. Peter McPartland, director of Fetal Maternal Medicine at the National Maternity Hospital, Dublin, addressed Ireland’s Citizens Assembly. He warned of the slippery slope created by these new and improved NIPT screening procedures by highlighting these sobering statistics:

In Britain, 90% of Down’s children are aborted. Of the 3,451 Irish women who had abortions in the UK in 2016,  “135 (or 4 per cent) had theirs [due to] serious physical or mental handicap [of the fetus]. Of the 135, … 69 [had] chromosomal abnormalities.  Forty Irish women had abortions after screening tests showed their child would be born with Down syndrome.” (Irish Times, January 7, 2017)

100% Down Syndrome-Free

But it was the statistic McPartland reported from Iceland that was the most shocking. Since the more accurate NIPT screening program began there in 2012, 100% of the babies diagnosed with Down syndrome have been aborted.

That last fact bears repeating.  Not one baby with Down syndrome has been born in Iceland in the last four years.

It is the same story in Denmark, where, since 2004, all pregnant women have been offered a DS scan. From a story in the CPH Post Online (October, 2015), since these scans have been offered, “the number of abortions involving DS children has increased dramatically” and , in 2014,  “98% of pregnant women who were revealed to be carrying an unborn child with DS chose to have an abortion” (cphpost.dk). If this trend continues, Denmark is projected to be 100% Down syndrome-free by the year 2030.

Population Reduced by 30% in the United States

In the United States, it is more difficult to know the exact number of abortions due to Down syndrome. A 2012 review published by the University of South Carolina and cited by Benny Johnson in the Independent Journal Review (March 2017), reports the US abortion rate for children with DS is between 67% and 85%.  The percentage range, according to Mark Bradford of the Charlotte Lozier Institute (April 2015), is because the United States does not have a registry that records birth defects along with prenatal diagnoses and termination rates as do European countries. Moreover, the commonly quoted number of 90% of babies with DS aborted in the United States is based on a 1999 European study and, therefore, is likely, not accurate.

Bradford suggests a clearer picture is presented in a study by Gert de Graaf, et al, published in the American Journal of Medical Genetics (2015). In this study, the authors conducted a detailed statistical analysis of multiple data sets and projected what effect the new NIPT procedures may have on the abortion rate of babies with DS in the United States.  Bradford’s summary of these findings is chilling. Even with the older, more invasive, diagnostic procedures, “abortion after prenatal diagnosis has reduced the population of individuals living with DS in the United States by approximately 30% .” As for what the future may bring with the NIPTs, Bradford says:

[de Graaf et al] state that prior to October 2011 and the availability of NIPTs, about 72% of women elected to have traditional prenatal screens and only an estimated maximum of 2% went on to have invasive diagnostic procedures, i.e., amniocentesis. If prenatal screening becomes more widely available, as seems to be happening, then one would expect the number of terminations to increase (lozierinstitute.org).

Preventing Suffering and High Costs

In 2015, Renate Lindeman and Bertina Slager, representing the group Downpride, wrote an “Appeal to the United Nations,” a scathing indictment of the actions of UN Member States toward persons with Down Syndrome. They, too, were alarmed at the rising abortion rate and its connection to the NIPTs. Presenting their evidence, Lindeman and Slager exposed the actual motivating factor behind these NIPT screening programs. Not surprisingly, it’s all about the money. “Genetic screening disguised as health-care is not about offering choices; [it has been] confirmed the real goal of Down-screening is money.” (downpride.com)

They quote Hans Galijaard, a former member of the UNESCO Bioethics Committee and professor of human genetics:

When I wrote my first Dutch paper on prenatal diagnosis, the insurers visited me because they saw the preventive effect. They thought, “Ah, wait a moment; here we are going to prevent suffering and a long period of high costs thanks to prenatal diagnosis and abortion.” (Hans Galijaard, from an interview with Peter Harper, 2010)

Lindeman and Slager point out that this practice ignores a UNESCO report (October 2015) which warned against screening programs based on reducing the costs of caring for individuals with Down syndrome or other disabilities.

To present screening [to enable selection] for a condition that is highly compatible with life and does not entail serious suffering solely as a medical and ethical issue is …wrong. First and foremost, screening and selection for Down syndrome should be treated as a human rights issue.

It is time, they say, that the UN “holds their individual governments responsible and act on this matter immediately.”(downpride.com)

99% are Happy With Their Lives

Today, as in Dr. Lejeune’s time, participation in prenatal screening programs is often achieved through fearmongering.  Testing advocates portray Down syndrome as a cause of untold suffering and sadness for the individuals affected and their families. However, such claims fly in the face of not only anecdotal but scientific evidence.  Three studies published in the American Journal of Medical Genetics (2011) by Dr. Brian Skotko revealed that siblings (94%) and parents (99%) take overwhelming pride in their family member who has DS.  Self-perceptions of children ages 12 and older with DS were similarly positive. Of the respondents to that study, nearly 99% indicated that they were happy with their lives, 97% liked who they were, and 96% liked how they looked. Only a small percentage expressed sadness about their life.