Jérôme Lejeune and the Challenges of Bioethics in the 21st Century
James Tissot, The Apparition, (detail), 1885.
It was a pleasure and a privilege for The National Catholic Bioethics Center (NCBC) to partner with the Jérôme Lejeune Foundation in their second international bioethics conference in Rome aimed at analyzing the main contemporary bioethical challenges in light of Venerable Jérôme Lejeune’s thought and legacy. 2024 is the 30th anniversary of Professor Lejeune’s death. This conference brought in experts from around the world to reflect on Genetics, Biotechnology, Neuroscience, Gender Dysphoria, Prenatal Diagnosis, End-of-Life Care, Surrogacy, and other topics from an interdisciplinary natural law perspective.
It is exciting that Professor Jérôme Lejeune, the famous discoverer of the genetic origin of Down Syndrome, was declared venerable by the Church and only needs approved miracles to become blessed and a canonized saint. He embodied the ideal of a Catholic doctor who loved his patients and a world class research scientist who upheld the highest ethical standards. There is almost no doubt that his discovery of Trisomy 21 would have earned him a Nobel Prize if he had not taken such a strong stand against the use of prenatal diagnosis to selectively abort preborn babies with Down Syndrome. He infuriated influential anti-life leaders when he said, “Chromosomal racism is horrible, like all other forms of racism.” His immense international popularity suddenly declined when it became clear that he would fight and denounce eugenics and abortion with all his strength. The NCBC published a short biography of Jérôme Lejeune written by his daughter Clara that is available for purchase.
Today, his legacy carries on with the Jérôme Lejeune Foundation and Jérôme Lejeune Institutes in France and several other countries. These institutions carry on medical research to find cures and therapies for mental disabilities of genetic origin, treat patients with Down Syndrome and other conditions, and carry on the fundamental task of research and professional formation in the field of bioethics. To carry out this mission, the foundation created an international chair in bioethics named after Jérôme Lejeune. Professor Mónica López Barahona from Spain is the current president of the international bioethics chair.
It was truly wonderful to have such a large gathering of several hundred bioethicists, scientists, lawyers, ambassadors, clergy, and students to reflect from the point of view of the Catholic moral and intellectual tradition about many contemporary and urgent bioethical issues. Professor Carter Snead did a very good job of describing the problem of “expressive individualism,” his term for the kind of radical individualistic autonomy that is the dominant paradigm in the US for laws with bioethical content. Dr. Maureen Condic showed how the process of creating three parent embryos really involves “destructive, eugenic reproductive cloning.” It is supposed to mitigate the inheritance of mitochondrial disease, but the techniques used create and kill most of the embryos without being a very effective treatment on a practical level. Bishop Robert Barron said that Jérôme Lejeune was one of his personal heroes who was a courageous witness against a flawed vision of the human person.
I thought the discussions of prenatal diagnosis, gestational surrogacy, and artificial procreation techniques were particularly interesting. It is shocking and unethical that many people receive the results of prenatal diagnosis tests via email as Professor Maria Luisa di Pietro related. Also, it is a near universal problem that when the preborn child is suspected to have a genetic condition or handicaps the assumption is that the mother will abort, and different forms of pressure are brought to bear. Professor Jane Wathuta from Kenya informed us that in vitro fertilization (IVF) is actively practiced in several African countries and surrogate mothers are increasingly hired there because of the lower costs and lack of legislation preventing it. The eugenic aspects of artificial procreation were emphasized by several speakers who also referred to the protests by disability rights groups who see those like them being systematically aborted and appeal for compassion: “Don’t screen me out.”
There was also a very good discussion of gender dysphoria, especially in children. Dr. Alfonso Oliva from the US Catholic Medical Association gave an overview of the explosion of gender dysphoria diagnoses and surgical interventions in the last few years in the US. This is clearly being driven by cultural change and peer pressure rather than naturally occurring psychological difficulties. He pointed out the striking fact that, historically, 85-90% of children resolved their gender confusion simply by having supportive parents who waited for them to go through puberty before making any radical changes. Unfortunately, the advent of puberty blockers for children almost always puts them on the path to cross-sex hormones and irreversible gender surgeries. Dr. Oliva showed how difficult the sex change surgeries can be in leaving patients sterile and frequently with terrible side effects from the “bottom surgeries.” Dr. Mary Rice Hasson explained that a broad coalition of detransitioners and groups are pushing back against destructive gender interventions. This is particularly true in Europe where the lack of medical evidence that gender surgeries yield long-term good results and the fact that they take healthy bodies and make them dysfunctional, have led the UK and Scandinavian countries to severely restrict or ban them for minors.
We were reminded throughout the conference that Jérôme Lejeune is a model and inspiration for us in standing up for the truth and having compassion for the victims of the culture of death. “The quality of a civilization is measured by the respect it shows to the weakest of its members,” he famously said. He also had a beautiful clarity concerning the true nature of medicine. “Medicine has long chosen and has always fought against disease and death, for health and for life. For even when nature condemns, the doctor’s duty is not to carry out the sentence, but to try to commute the punishment.” We need more medical, scientific, and bioethics leaders like Venerable Jérôme Lejeune today.
