French Geneticist Jérôme Lejeune with a Boy with Down Syndrome. Wikimedia Commons

A Saint For Modern Times

More than 50 years after his life-changing discovery, the work of the father of modern genetics continues into today. We present the story of a scientist whose commitment to his life's ideal brought him along the path of sanctity.
Ombretta Salvucci

When someone recently inquired, looking at the prayer card keeping vigil over my work desk, "Who is this guy?" my immediate response was, "Jérôme Lejeune–he is my best friend!" This might seem unlikely, given that we never met and he died more than 15 years ago. I had heard about his life and his scientific achievements when I was a PhD student in Paris, from 1994 to 1998. Born in 1926 in Montrouge (Paris), Jérôme started his medical studies at the age of 15. He repeatedly failed the exam for entry into Surgical Residency. The final time he headed to the exam, deep in thought, he took the subway in the wrong direction and he arrived late for the test. Considering this a definitive sign from Providence, he gave up his idea of a surgical career for good, and he joined the CNRS (National Center for Scientific Research) as a researcher-in-training. On May 1, 1952, in Odense, Denmark, he married Birthe Bringsted, with whom he would have five children. In July 1958, Jérôme Lejeune, while examining the chromosomes of a child born with Down syndrome, discovered the existence of three chromosomes on the 21st pair. This discovery of what was later to become known as Trisomy 21 was of considerable importance, since it ope­­ned the way for the new science of cytogenetics, the study of the relationship between inheritance and the structure and function of cell components. Its exponential development in many directions led to the understanding of the secrets of hereditary science. At the level of the family, it was an incredibly liberating discovery: Down syndrome had previously been attributed to the mother being a carrier of syphilis, a socially communicable disease with the added weight of shame attached to such a birth. Now, families concerned with public opinion no longer had to hide or give up their Down children due to personal humiliation.

The list of recognitions and titles with which Dr. Jérôme Lejeune was honored after his discovery is staggering, comprising some 80 pages and including the coveted Kennedy Prize that was given to him by President John F. Kennedy himself in 1962. In October 1965, he was given the first chair of fundamental genetics at the University of Paris. In August 1969, the American Society of Human Genetics granted Dr. Lejeune the William Allen Memorial Award, the highest distinction that can be granted to a geneticist. On his arrival in San Francisco, where he was to receive the award, Jérôme became aware that the abortion of Down syndrome children–who were being diagnosed in utero using Lejeune's discoveries–was expected to be authorized. He would speak out against this while in America at an important genetics conference. "The physical nature of man," he explained, "is completely contained in the chromosomal message, from the first moment of conception. This message makes the new being a person–not a monkey, not a bear, but a man whose complete physical potentiality is already contained in the information given to his first cells. Nothing more will be added to these potentialities, which will serve his intellectual and spiritual life–everything is there." He bluntly concluded: "The temptation to kill by abortion these small people afflicted with disease is contrary to moral law; and genetics confirms this conclusion. This moral law is not arbitrary." Not a single clap followed Lejeune's talk, which was met with hostile or annoyed silence from these men, the elite of his profession. Jérôme had collided head-on with them. He wrote to his wife: "Today, I lost my Nobel Prize in medicine," but he was at peace. After this day, life was a real martyrdom. Persecution began particularly in the form of repeated tax inspections, and he received neither a promotion nor a salary increase in 17 years. His research grants were withdrawn and he was forced to close his laboratory. American and English laboratories, indignant about this mistreatment of the brilliant scientist, granted him no-cost private loans. The friendship with the Holy Father "John Paul II" was a great support to him. In 1974, he became a member of the Pontifical Science Academy. He was appointed President of the Pontifical Academy for Life, just before his death of cancer on Easter morning in 1994 in Paris.

How did Jérôme Lejeune become my best friend? At the end of 2006, when I took up a difficult but inviting cancer research position at the National Cancer Institute in Bethesda, Maryland, I had just gone through a professional drama that precipitated a personal crisis, which made it hard to face my life and work with positivity. A random Zenit Internet communiqué announced that Professor Lejeune was on the road to beatification. I recalled from my Paris research days the incredible life and work of Jérôme Lejeune. This news struck me to the heart as a sign: I would begin to pray to Lejeune for help in my every need. From that moment on, my life changed, as my attitude miraculously became one of hope and promise that infected home and work and all those around me. This time of grace was the beginning of the inspiration that led to the proposal of an exhibit on the Lejeune Foundation for the NY Encounter of January 2011 (the annual cultural festival held in New York city), a proposal that has excited and catalyzed his family and followers who, like me, would like to share the wealth of knowledge and profound love that characterized the man and the family of Jérôme Lejeune.

The path to preparing this project led my friends and I to contact Ms. Clara Lejeune-Gaymard, daughter of Jérôme Lejeune, who wrote a book on her reminiscences about her father. This book, Life is a Blessing (re-published by the National Catholic Bioethics Center and the Jérôme Lejeune Foundation, 2011), is a wonderful memoir of her father's scientific genius as well as the martyrdom he endured as a result of his pro-life convictions. She begins the book with these words: "I had as my father an extraordinary man who, acting from conviction, chose a cause that was lost from the start, a pessimist whose realism was inspired by a formidable hope. In this world, where there is talk only of suffering, misery, and injustice, how does one say as well that life can be beautiful, very beautiful?" Clara describes how his opposition to abortion, eugenics, and embryonic stem cell research was motivated not by ideological reasons, but by his affirmation of a scientific truth about the reality of the human embryo.

Ms. Lejeune-Gaymard is a member of the Lejeune Foundation, founded to support research into overcoming intellectual genetic disabilities, as a way to continue her father's dream of curing Down syndrome. Besides working to preserve the memory of her father and forwarding the momentum of his discoveries, she is the mother of nine children as well as the Vice-President of Government Sales and Strategy at General Electric International and President and CEO of GE in France (and as such finds herself right in the middle of the economic crisis affecting the entire world!). While at the New York Encounter, she will speak to large audiences on both her father's life as well as on the present economic situation. Inspired by her unique and faith-filled parents, people of tremendous strength and conviction, she brings a rare mix of realism and hope to the table of life that she shares with all.
Jean-Marc Guilloux, an electrical engineer living in Virginia with his wife and their six children (one of whom is an adopted son born with Down syndrome), is involved in efforts to make the Jérôme Lejeune Foundation a recognized presence in the USA. While the Foundation has been generously funding research in America that meets its ethical and academic criteria for ten years now, with their participation in the New York Encounter event of January 2011, the Foundation is getting ready to establish an American component. At the Encounter, the public will be introduced to the newly re-published memoir by his daughter. This public debut is only the beginning of increasing awareness of the Foundation, its work, and its promise for the future. Parisian-based Executive Director of the Jérôme Lejeune Foundation, Thierry de La Villejégu, explains that since the mapping of the human genome in 2000 and the great strides made in therapeutic research since then, an American collaboration could be important in developing future medications.

La Villejégu and his team and supporters have worked hard, "step by step, to change the public view. For many, the reality of a Down syndrome baby seems to be a 'horror.' This prejudice was one Lejeune himself faced daily, even outside his home where he found threatening graffiti: 'We must kill Professor Lejeune, and his little monsters.'" The key, insists La Villejégu, lies in bringing hope to families with Down syndrome children, especially early on to those carrying unborn children diagnosed with Down syndrome. Women are often advised to abort babies whose prenatal testing reveals the genetic disorder, with the result of 96% of those diagnosed being aborted in France, and over 90% in the U.S. If therapeutic research can develop medications to increase the intellectual capacity of Down syndrome babies by 10% to 20%, which is entirely possible in the near future, mothers and families would be greatly heartened to know that a child born with Down syndrome could eventually be self-sustaining in society. "And when these children are welcomed, the family certainly discovers so much more: that an incredible joy and treasure has been introduced into their lives!"