Pro-Life Heroes and Heroines, No. 8: Jerome Lejeune
by Oxford Students for Life
A key figure in modern genetic science, Jerome Lejeune is best known for his discovery of the extra chromosome that causes Down syndrome, and best loved for his work in caring for those with the condition.
Born in France in 1926, Lejeune studied medicine in Paris and became a researcher at the National Centre of Scientific Research in 1952. He published a seminal paper in 1959 with two colleagues, Raymond Turpin and Marthe Gautier, which showed that those with Down syndrome have 47 chromosomes, just two years after it had been proved that the standard amount is 46. For the discovery of ‘trisomy 21’ he won the Kennedy Prize in 1962 and was named the first chair of human genetics at the University of Paris in 1964. He went on to identify the cause of cri-du-chat syndrome, among other chromosomal disorders, and was given the William Allan Memorial Award from the American Society of Human Genetics in 1969, the highest distinction that can be granted to a geneticist.
One of the consequences of Lejeune’s discovery was the screening for Down syndrome that became available in the 1970s, which led to routine abortions on prenatal diagnosis. Lejeune was deeply troubled by this: “Hate the disease, love the patient: that is the practice of medicine,” he said. He spent much of his later life working to discover treatments for such conditions.
People say, “The price of genetic diseases is high. If these individuals could be eliminated early on, the savings would be enormous!” It cannot be denied that the price of these diseases is high—in suffering for the individual and in burdens for society. Not to mention what parents suffer! But we can assign a value to that price: It is precisely what a society must pay to remain fully human.
He was pro-life because he believed that every life, no matter how many chromosomes it relies on, is worth living and deserves protection. His pro-life stance was not just that though – it was dynamic; he’s a pro-life hero because his beliefs had consequences for his personal life and professional career. The Nobel committee had considered rewarding the discovery of the origins of Down syndrome, but when Lejeune spoke out against abortion at a conference of delegates to the United Nations, he had to write to his wife later that day: “Today, I lost my Nobel prize in medicine.” His funding for research was cut, he was marginalised by the academic community and his family were even routinely harassed.
He continued to defend the most vulnerable, though, even travelling to the United States in 1989 to be a witness at a court case which would decide whether frozen embryos were properly ‘property’ or not. You can read his statement about the origins of human life here. Alongside his research and this kind of advocacy of the right to life for all, Lejeune dedicated himself to caring for those with Down syndrome. He was the founder of the first specialised clinic for trisomy 21 patients at Necker Children’s Hospital in Paris. He paid personal attention to each of the 9000 children who passed through his wards – his daughter Clara records that at the time of his death he knew the 5000 current patients by name. He also worked to help them find educational and job opportunities, and was a constant support for many families across the world. Thousands of parents came to him, seeking advice and comfort. Clara recounts that people would call him and – day or night – he would spend hours with them.
Jerome Lejeune died of lung cancer in 1994. He was a pro-lifer who was not afraid to put his reputation on the line, an expert doctor and scientist who put his life at the service of those he worked with. We’ve cited the statistics on this blog before, but they’re still shocking. Around 90% of foetuses diagnosed with Down syndrome are aborted in Britain every year. We should be asking, in the practical spirit of Lejeune, what more we can do about it. Clara talks about a family lunch in her biography: her father came home and told them about a little boy with Down syndrome who had seen something on television about prenatal testing, and who begged him to save him from “those who want to kill us.” She writes: “He was white and he said, “If I don’t protect them, I am nothing.” The ‘price’ of not resorting to eugenics might be high, but Lejeune saw that it is cost of remaining “fully human”.