‘To kill or not to kill, that is the question’

A new film about Jerome Lejeune shows the drama of his life after identifying the cause of Down syndrome.

Mary Le Rumeur | Jun 21 2016 | comment

It is August 1969 in San Francisco and Professor Jerome Lejeune is addressing the annual meeting of the American Society of Human Genetics.

Ten years earlier he had discovered the genetic cause of Down Syndrome, when he saw under his microscope in a Paris laboratory the third little mark on the 21st chromosome. In 1962 he received the Kennedy Award from the hands of President John F Kennedy for his work with handicapped children.

But the drama of his life was that his discovery of trisomy 21 would lead to a medical holocaust, national health systems giving huge funds to track down and eliminate these children before they could be born.

Invited to America to receive the highest distinction in genetics for his work, the William Allen Memorial Award, Lejeune decided to use this occasion to speak out in defence of "his patients" -- the children and their parents who already came from all over the world to seek his advice and help in Paris.

Losing a Nobel Prize

Colleagues tried to persuade him just to address the scientific questions. But Lejeune had given months of reflection to his speech. He had counted the cost.

In his soft, very precise voice he said : "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."

That night he wrote to his wife, "Today I lost my Nobel Prize."

As he had foreseen, Lejeune was ostracised by the scientific, medical and political elite in France. His research funds were withdrawn. In the 1960s doctors had been proud to belong to the « Lejeune team », but in the 1970s it was social suicide. During the campaign to legalise abortion in France in 1975 slogans were painted on the walls of the Sorbonne : "Death to Lejeune". His own children saw these attacks against their father.

'To the least of these...'

These key moments of his life are explored in a recent film made by François Lespés and titled in English, Jerome Lejeune : To the Least of These My Brothers and Sisters (a reference to Christ’s words, "Whatever you do to the least of my brethren…").

The film shows how Pope Paul VI created the Pontifical Academy of Science in 1974. This gave Professor Lejeune the chance to work with the elite of the international scientific world on questions of science and ethics.

His meeting with Cardinal Wojtyla in Poland in 1975 was the beginning of a strong friendship, which continued when his friend became Pope John Paul II in 1978. On a visit to France in 1997 the Pope insisted on praying before the tomb of Jerome Lejeune, in the company of his wife and children and grandchildren.

As many countries began to deny the value of life in the womb, Lejeune travelled tirelessly around the world, defending the humanity of the human person from his or her very beginning.

Maryville Court Case

A remarkable trial took place in Maryville, Tennessee in August 1989. A young divorced couple were battling over the custody of their seven frozen embryos. The mother wanted to have custody so she could have the embryos implanted in her womb, to try and bring them to birth. Or else she wanted them to be given to other childless women. The father wanted custody so that they would remain frozen and be eventually destroyed.

"The judgment of Solomon all over again!" said Lejeune when the lawyers for the mother contacted him, asking him to give evidence. The transcript of this trial -- "What's in the Fridge? Jerome Lejeune's Expert Court Testimony" -- can be read on the website SEDIN. The simple, seemingly facile descriptions of the beginnings of life actually demonstrate the amazing pedagogy of a great scientific mind.

The trial judge in Davis vs Davis seemed convinced by Lejeune’s testimony,awarding custody of the embryos to the mother: "Human life is not property, and human life begins at conception," said Judge W. Dale Young. "Mr and Mrs Davis have produced human beings, in vitro, to be known as their child or children." This judgment was later overturned by a higher court.

His vocation

As a young medical student, Lejeune had intended to become a country doctor, to practise medicine with a close relationship to his patients. In fact, his vocation was to be a great scientist, but also to practise a medicine of deep humanity. He treated the most rejected of human babies, revealing their value to their parents and families, and to a society which was demanding more and more perfection.

His discovery of the genetic cause of Down Syndrome immediately removed the shame that had been felt by families, as all sorts of reasons had been given for this condition.

In 1989, the King of Belgium, King Baudouin, requested a visit from Professor Lejeune, as a representative of the Pontifical Academy of Science. The Belgian Parliament was debating a law to legalise abortion, a law which the King would refuse to sign. At the end of their meeting, the King asked Professor Lejeune "Would you mind if we pray together?" These two men, remarkable for their moral courage, and their humanity, are now both candidates for beatification by the Catholic Church.

The Jerome Lejeune Foundation in Paris has continued Lejeune's work since his death on Easter Sunday 1994. His wife, Madame Birthe Lejeune, is still a very active member of the foundation as are their children and their spouses. A clinic has been created to welcome families whose children suffer from any kind of genetic condition, and research projects are constantly funded to seek to ameliorate the lives of these children. The Jerome Lejeune Foundation has an associated organisation in theUSA and an office in Madrid.

An English language DVD of the film, To the Least of These, can be purchased from the US Foundation.

Mary O'Neil Le Remeur writes from Angers in France. She has a sister with Down syndrome.

One of the truly heroic figures of bioethics is Jerome Lejeune, the French geneticist who identified the genetic cause of Down syndrome. He was firmly convinced that from the moment of conception the embryo is a human being and should be protected. His insistence upon this point may have cost him the Nobel Prize. In today's lead article Mary Le Rumeur reviews a new film about the life of his remarkable man.