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How Jérôme Lejeune Revolutionized Society’s View on Down Syndrome

How Jérôme Lejeune Revolutionized Society’s View on Down Syndrome

Jerome Lejeune was a French Catholic pro-life paediatrician and geneticist, best known for his discovery of the link of diseases to chromosome abnormalities. (photo: Public domain)

On the occasion of the release of her biography about the ‘father of modern genetics’ in the US, the postulator of his cause of canonization discusses the heroic nature of his virtues, as well as his spiritual and intellectual legacy.

French geneticist and pro-life champion Jérôme Lejeune (1926-1994), who discovered the extra chromosome that causes Down Syndrome, is at the heart of a biography recently published by Ignatius Press. Jérôme Lejeune, A Man of Science and Conscience is the fruit of 11 years of in-depth research works by the postulator of his cause of canonization since 2012, Aude Dugast.

A philosopher by training, Dugast has been a close collaborator of Lejeune’s family since she joined the Lejeune Foundation in 1999 as a communication officer, and she was also vice-postulator of the diocesan inquiry from 2007 to 2012. She has an extended knowledge of the various aspects of the work and life of this Servant of God, close friend of John Paul II and first president of the Pontifical Academy for Life.

In this interview with the Register, Dugast paints the inspiring portrait of a man that she considers to be more than a scientist, discussing his impact in the medical field and the intellectual life of his time, the major role of Lejeune’s Birthe in his career, and the years of hardship he experienced for not betraying his conscience and faith.


The title of the original French version of your book is La liberté du savant. This word, “savant” is difficult to translate into English (and was translated as ‘man of science and conscience’ in the English version of the book), and has a wider meaning than the words “scholar” or “scientist.” You have often explained in interviews that this term was important to you. Why this distinction?    

The term “scientist” evokes knowledge, excellence in a field of scientific competence and a form of expertise. It also reveals an analytical or objective research spirit. Moreover, today when we use the word “science,” we refer to experimental or hard science. But not so long ago, philosophy was also considered a science.

We also see that today, in our post-modern era, science is more and more synonymous with technical knowledge. Science asks the question of how, but it does not ask the question of why. Philosophy or theology can answer this why.

Nowadays, a scientist is going to be more and more technical and, as a result, the technique is cumulative. As Jérôme Lejeune used to say, technique is cumulative but wisdom is not. We can accumulate technical knowledge, and unfortunately not accumulate the wisdom that will help us know how to use this growing technique.

Jérôme Lejeune had precisely this extraordinary capacity not to consider that technology was sufficient in itself, not to consider that everything that was allowed by technology was morally good and feasible. He really thought of science as a means to knowledge. But he was not afraid to think philosophically as well, to integrate the natural moral and even spiritual thinking into his reasoning. He obviously saw no contradiction between faith and science. This is a very important point of his personality.

He demonstrated through his works the unity between faith and science, in a remarkable way. Thus, he gave a depth to things and did not bring just a technical answer, but also a wise answer. Therefore, the French word that best explains this double dimension is savant. It is a word that is no longer so widespread, but it defines Jérôme Lejeune well.

It’s interesting because as a child, he experienced the war and didn’t go to school for a year because it was too dangerous. So, his father invited him and his brother to read all the books they wanted in the family library. He had an absolutely gigantic collection At 17, he had read all the Latin, Greek and French classics. There are not many young people who at that age have read Bergson, Homer and Virgil. … This nourished his intelligence, his reflection, his understanding of the world. It gave him a great perspective on things and, as a result, he was able to put science in its rightful place.


How did you first become aware of Jérôme Lejeune’s work? What made you interested in his work and induce you to get committed to his fight?

The cause of life has always touched me. And I had always heard about Jérôme Lejeune because I grew up in a Catholic environment, my father was a doctor and was already very sensitive to the cause of life as well. Then it was by chance — meaning by providence — that I joined the newly created Lejeune Foundation in 1999 to take care of bioethics and communication. Then, when Cardinal Vingt-Trois, then the archbishop of Paris, decided to open the canonization process of Jérôme Lejeune in 2006, he asked the Lejeune family for help. Father Jean-Charles Nault, at the time prior of the Benedictine Abbey of Saint-Wandrille, was asked to be the postulator. He gladly accepted and appointed me vice-postulator.

It was an extraordinary adventure. We did the whole diocesan process together until 2011, and in 2012, we brought all the acts of the process to Rome. Then the Roman process began and I became the Roman postulator, because the postulator must live in Rome during this phase.


It is then in the framework of your mission as postulator that you wrote this biography, isn’t it?

Yes, because the process started in 2007 and the first part of the process consists of investigating and gathering all the evidence and documents to establish the heroicity of the person’s virtues. So, we study everything about the person: his documents, his letters, his diary, the witnesses’ hearings, we have access to everything. Obviously, this is a great privilege. Then I wrote the positio that I will gave to the Congregation for the Causes of Saints. But this document is strictly private, no one outside the congregation will ever have access to it. So, I thought that what I discovered was such a treasure that I had to share it.

His life is so beautiful. And then, beyond his life, which is already very motivating, I also wanted to transmit a some of his thoughts and reflections that can help us directly today, so that the reader can draw from his biography and find answers, including on subjects on which Christians today are being challenged a lot without always being able to argue.


What makes you think that Jérôme Lejeune was a saint? 

A postulator must provide proof that the person has lived each of the 11 Christian virtues to a heroic level, that is the three theological virtues (faith, hope, charity), the cardinal virtues (strength, prudence, temperance, justice) and then humility, poverty, chastity and obedience for the minor virtues. So, this is a lot of research and it is very beautiful because quite quickly, we understand that if we live one of these virtues in a heroic way, all the others naturally follow because it is difficult for instance to live faith in a heroic way, to believe in a God of love if we are not ourselves full of love, therefore of charity. And if we believe in this God of love, we also necessarily have hope, everything is connected.

And for Jérôme, the virtue of faith is obvious. He never doubted, and his faith grew in step with his intelligence and his scientific knowledge. And he was magnetized by the truth, it is striking.

His whole being was oriented towards the search for the truth and the testimony of the truth. As a result, he used his scientific and spiritual intelligence to discover the mysteries of the created world with the great merit of being able to transmit it to the world in simple words, and with great humility.

One can truly say that he had a genius intelligence. He was a genius. But he always put himself at the level of his audience and in front of him, everyone has the feeling of being intelligent. Everything seems very simple. He describes to you how the brain works, how DNA works, it’s extraordinary.

All this is combined with a heroic charity because he had an unconditional love for his patients that he proved when it came to the abortion of Down syndrome children.

He did not follow the spirit of the times. His morals were safe. And that’s heroic because he knew he was going to get in a lot of trouble for doing that, he knew that. But he said that he was their natural advocate because these children could not defend themselves alone. And so many doors were closed to him. He received death threats, meat was thrown at his head to represent aborted fetuses. … He always remained incredibly calm and gentle. And Providence was stronger from then on, he was recognized as the true defender of life. This is the mark of his heroic nature.

We can of course mention the hope of the Christian, a Christian doctor who sees in the patient a person made in the image of God, who has an infinite price. And this look of love and hope transforms the patient and the parents.

I have many testimonies from parents who were overwhelmed by the way Lejeune welcomed their child and looked at him. It helped them to look at their disabled child with renewed love. And you can see that charity and hope are very close because this look gives a new hope to parents. The parents left totally strengthened, transformed.

Moreover, justice is Lejeune’s great cardinal virtue. He fought for the rights of all unborn children to be recognized. And he was not afraid to sacrifice his own career for this. And he lost a lot in the process: He lost almost all of his invitations in the United States, he didn’t get the Nobel Prize [he was nominated twice for the prize], in France the French National Centre for Scientific Research (CNRS) took away his research credits and his team. … In 1981, he found himself all alone, with only a female researcher next to him, sitting on a cardboard box. … At the peak of his career, it was very violent. But he continued, nothing could make him deviate from what he saw as the truth of the intelligence and the truth of the heart to witness life. And this unity of the intellect and heart gave him an extraordinary freedom.

In our post-modern world, the pressure is enormous, and if you are not inwardly free, if you are not ready to lose everything to follow your conscience, you are always in danger of compromising yourself.


What does he still have to say to today’s world, how would you summarize his legacy? 

His scientific legacy is first of all this discovery that revolutionized the world of genetics and the lives of these families. We don’t realize it today, but before this discovery in 1958, families who had a Down syndrome child, or a “mongoloid” child as it was called at the time, were at a loss, not to mention the way society looked at their child and therefore at them.

The whole family was ostracized and they were hidden. The other girls in the family could not get married, their lives were ruined. By showing that it was a chromosomal disease, Lejeune revolutionized the society’s view of families and gave them back their dignity. It freed them from the weight of suspicion and fatality. This is already a huge step.

He discovered many other chromosomal diseases and made genetics a discipline in its own right, he created the first cytogenetic certificates, he was the first professor of the first academic chair of genetics in France. He was also the dean of the University of Medicine in Paris.

It is said that he was the father of modern genetics. All the geneticists in France for 30 years were his students. He had an enormous impact, not only in France, but also in the United States, and all over the world.

When he died, everything came to a halt because France had decided to screen and eliminate Down syndrome patients, so the money they were putting in was not being used for research and care. As a result, the families found themselves completely helpless. This is how Birthe Lejeune, Jérôme’s wife, took up the torch, with the doctors who worked with them and the families of children with Down syndrome. They recreated ex-nihilo a Jérôme Lejeune medical center and that is how the foundation was created to continue his work.

Today, the fruits are extraordinary. We have 12,000 patients in Paris, it is the largest consultation service in the world, we have a consultation that has just opened in the United States and another one in Argentina. And of course, we continue our research to find a treatment.

The Jérôme Lejeune Foundation is the first funder in research on trisomy in France, it works with laboratories from all over the world and research has advanced. This is a great hope for the families as well.

And then, of course, we also continue our action of testimony in favor of the beauty of the human life, the defense of these disabled children’s rights.

On the spiritual level, there is first of all the demonstration that faith and science go hand in hand, that to be a great scientist, there is no need to put one’s faith aside. In the same way, to be a venerable man, with heroic virtues, there is no need to put aside one’s intelligence, quite the contrary. Therefore, Jérôme Lejeune’s intelligence is truly at the heart of his holiness.

I find this fundamental for today’s hyper-rationalistic world, which believes that faith is the result of the beliefs of old women who are not intellectually trained. Jerome Lejeune efficiently dismisses this misunderstanding surrounding faith and intelligence.


You’ve just mentioned Birthe Lejeune, who passed away in 2020. In your opinion, what was her role in Jérôme Lejeune’s life?

Her role was essential. I tend to say that she was more than a right-hand woman. She was a whole part of him.

There is this famous letter that you can find in my book, and that he had written to her a week before their wedding. I was very touched when I discovered this letter. I was overwhelmed when I read it. What does he propose? He talks about the essentials, saying, “There are these children with Down syndrome who were called mongoloid, there is something to be found, and if you agree to a difficult but fair life, where we will earn little money, where we will have to make a lot of sacrifices, I am sure that we will be able to find out why they are like this and then how to cure them. And I say ‘we’ because I know that I, alone, will not succeed, only if you help me I will succeed in doing something.” And she said Yes. And this “Yes” is extraordinary because it founded not only their couple, but also all their life.

And certainly, Jérôme Lejeune would not have been the man we know if Mrs. Lejeune had not been by his side, if only on a very simple level. Mrs. Lejeune was a kind of pure life force, and Jérôme was a scientist, a poet, who was also very concrete, but who did not have the life force of Mrs. Lejeune.

You have to have known her to understand what that means. She was never tired. Three months before her death, she was flying back from Madrid at 4 o’clock in the morning at the age of 94. Jérôme had a more fragile health.

She gave him a large part of his strength, both physical and moral. And he really found in her the best ally because she supported him, encouraged him, advised him. … They made all their decisions together. He told her everything. When they were away from each other, they wrote to each other every day. We have 2,000 letters of their correspondence. Mrs. Lejeune was totally devoted to her husband and Jérôme was also very attentive to his wife’s well-being. It was not at all one-sided, but I think Mrs. Lejeune is an extraordinary example of a wife. For she gave up a great career as a reporter for him, and to take care of their children.

Some would say that she “sacrificed” her career for her husband and children, which is true. But she has had another career, one that is far more interesting because her husband’s destiny — and therefore hers — was extraordinary.

When Jérôme died in 1994, she and her family decided to create the Jérôme Lejeune Foundation. And from then on, she was the one who was thrown into the forefront. Within a few weeks, she became a new witness, a missionary of life, of work for children with Down syndrome. And she in turn has traveled the world to give conferences, speaking about Jérôme and his work with extraordinary talent. It is really a beautiful example of a complementary couple, each one as they are with all their differences. Most of the people who knew them well said that they were a Providential couple.


What has been the highlight, the most inspiring discovery of your years of research on the life of this great man?

The process of research and study lasted 13 years because we started in 2007. There is nothing that surprised me really, because he is a transparent, luminous, simple, straightforward man.

What edified me was the simplicity of his holiness. He was not born a saint, he became one. He was not a Don Quixote, a crusader who said “I am going to save the world.” He was a scientist passionate about his patients, his research, his wife and five children.

He was a poet. But on the other hand, he took the faith of his baptism and the Gospel seriously. He let himself be led by the circumstances of life, by his encounters with these children. And when other circumstances of life asked him to betray this medical commitment, of the Hippocratic oath, he said no, I am a doctor and it is evidence of intelligence that an embryo is a human being that a doctor must treat. This was his speech, always very simple, very rational, unstoppable. That is why at some point he was no longer invited on television: his arguments were unstoppable.

If he had not had this approach, he would have denied himself. If our intelligence is in tune with our heart, we cannot deny Christ. He had the talent of speaking and announcing the truth, in season and out of season, and of purifying our minds from the dross of relativism. Speaking the truth, he converted doctors. And this is what moved me the most and made me reflect.

It is wonderful to see that this great scientist oriented his whole life according to the words of Jesus in the Gospel: “whatever you did for one of these least brothers of mine, you did for me” [Matthew 25:40]. He often ended his lectures with this Gospel call. It is the compass of his life.

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