Screening for ‘perfection’ and the need for the legacy of Jerome Lejeune

By Margaret Akers

“Even the most disinherited belongs to our kin, because these victims are poorer than the poorest, and because the sorrow of the parents cannot be consoled by science. But should we capitulate in the face of our own ignorance and propose to eliminate those we cannot help?” — Jerome Lejeune

Dr. Lejeune’s Discoveries

June 13 marked the birthday of the late French geneticist and pro-life advocate Jerome Lejeune. He is best known for his discovery that Down syndrome is linked to chromosomal abnormalities. He also discovered that chromosomal abnormalities cause various other disabilities (including Cri-du-chat syndrome and 18q-syndrome). These discoveries had a huge impact in the fields of medicine and genetics – strengthening our understanding of these disabilities. The discoveries also paved the way for prenatal diagnoses of these abnormalities. Unfortunately, this has led to countless abortions of unborn children with disabilities.

Prenatal Genetic Testing

Today, expectant parents have access to NIPT (non-invasive prenatal testing), which examines fetal DNA by taking a blood sample from the pregnant woman. Previous forms of genetic testing were more invasive, and carried with them greater risks. Many hope that NIPT will make prenatal genetic testing safer and more accessible.

But prenatal testing has a darker side. Already in the UK, 90% of unborn babies who receive a prenatal diagnosis of Down syndrome are aborted. In Iceland and Denmark, that percentage is closer 100%. Parents who receive a prenatal diagnosis of Down syndrome are under tremendous pressure to abort their children – from friends, family, and even medical professionals.

Disability advocacy groups have spoken out about NIPT and other prenatal genetic testing. Most notably, the organization Don’t Screen Us Out was set up in the UK in order to campaign against NHS funding for screening for disability.

Incorrect Results

NIPT and other forms of prenatal screening also carry the risk of false positive and incorrect results. Recently, an Irish couple had an abortion when they received a prenatal diagnosis for Edwards Syndrome – a serious chromosomal disorder often described by the dehumanizing and medically inaccurate term “fatal foetal abnormality.”

But a procedure they had after the abortion showed that this previous diagnosis was incorrect, and in fact their baby had not been disabled. This particular case has been the cause of a review of procedure at the National Maternity Hospital.

On the other end of the spectrum, a couple in Australia intends to sue the Gold Coast Hospital for failing to prenatally diagnose their daughter with Down syndrome. They say they would have aborted her, had they known. They are seeking damages for the costs of raising their daughter, who is now four-years old.

Protecting The Vulnerable

Of course, the problem with prenatal screening is not just that sometimes it is incorrect. It is that it is being used to target and discriminate against the disabled. It suggests that those with genetic disability have lives that are less worth living – that they are too much of a burden. It perpetuates a culture which devalues those most vulnerable and precious members of our communities.

This was not lost on Jerome Lejeune. Dr. Lejeune was incredibly distressed that his discoveries could have opened the door to discriminatory abortion practices, or any abortion for that matter. He became an out-spoken pro-life advocate. Upon receiving the William Allen Memorial Award, he took the opportunity to stand up in defense of the unborn, saying, “For thousands of years, medicine has striven to fight for life and health against disease and death. Any reversal of this order would entirely change medicine itself.”

He was not without compassion and care for those families who received difficult, and often fatal, prenatal diagnoses. Writing about this experience of healthcare professionals, he said:

“…I believe our response must be guided by two sentiments only – humility and compassion. Humility because we must recognize we have no ready-made answers, because geneticists have not broken the secret of the human condition, and because scientific arguments are of little help in ethical issues; compassion because even the most disinherited belongs to our kin, because these victims are poorer than the poorest, and because the sorrow of the parents cannot be consoled by science. But should we capitulate in the face of our own ignorance and propose to eliminate those we cannot help?”

Dr. Lejeune served as President of the Pontifical Academy for Life, which he was instrumental in setting up. But he was only in the position for a few weeks before his death. He died of lung cancer in April 1994.

Jerome Lejeune’s Legacy

Jerome Lejuene has been named ‘Servant of God’ by the Catholic Church. This is the first step in the long process of being canonized a Saint.

Dr. Lejeune teaches us that science, compassion, and humanity can walk hand-in-hand when correctly balanced. Simply because science can lead us to new discoveries, does not mean we should allow people to do whatever they wish with that information.

It is the duty of all of us to defend the most vulnerable members of our communities, both before and after they are born.

Editor’s note. This appeared at SPUC–the Society for the Protection of Unborn Children and is reposted with permission.