by Cathy Ruse
December 19, 2012
On December 6, 1962, Jérôme Lejeune received the first Kennedy Prize from President John F. Kennedy for his discovery of the genetic cause of Down syndrome and his care for those with genetic intellectual disabilities. This December marked the 50th anniversary of that event.
The story of Trisomy 21, the genetic disorder that causes Down syndrome, is remarkable, and follows the life of a remarkable man. The following excerpts are taken from an article I wrote with my husband, Austin Ruse, which appeared in The Catholic Thing on December 16, 2011:
In 1958, Jerome Lejeune was a thirty-two-year-old geneticist working in a Parisian laboratory when he discovered the genetic marker for Down syndrome. Only two years before, scientists had discovered that the human species possessed forty-six chromosomes. Lejeune was able to count forty-seven chromosomes in children with Down syndrome. He went on to discover several other chromosomal anomalies including Cri du Chat Syndrome.
His work was hailed around the world. He received the Kennedy Prize in 1963 from the hand of President Kennedy himself. He received the William Allen Memorial Award, the highest honor in genetics. His work formed the foundation for whole new fields of genetic research.
And then, the horrific irony. A method for diagnosing Down syndrome in utero was developed, abortion was decriminalized, and it became open season on unborn babies with intellectual disabilities. His discovery led to a holocaust.
Lejeune spent the rest of this life fighting this holocaust. And for this he lost almost all of his worldly prestige. He and his family received death threats. A well-deserved Nobel Prize never materialized.
None of this mattered. For Lejeune, what mattered was the children: “I see only one way left to save them, and that is to cure them.” He dedicated his life to finding a cure for Trisomy 21 and spent his final days traveling the world giving lectures about the dignity of the human person, no matter how small, no matter the location, no matter how disabled.
Lejeune died of lung cancer in 1994. Just before that, his friend John Paul the Great created the Pontifical Academy for Life and named Lejeune its first president. When he died, John Paul prayed at Lejeune’s grave in France.
The Lejeune Foundation calls the Kennedy Prize “a turning point in the perception of persons with intellectual disabilities.” It was Lejeune’s discovery, and President Kennedy’s recognition, “that began to free persons with trisomy 21 of the stigma they had previously carried from their birth.”
In his speech at the award dinner that evening, President Kennedy said intellectual disability had been “hidden under social disadvantages” and “considered a mark against the parents.” But “it was really a disease, or a difficulty, or a challenge to which few people gave their attention. Now we hope that it will come out into the bright light. And will be given the same sort of attention as cancer and heart disease and all the rest which afflict our people.”
The Jérôme Lejeune Foundation recently opened an office in the United States. Please see the organization’s website for more information.