The father of modern genetics, Dr. Jerome Lejeune, discovered that an extra copy of chromosome 21 was responsible for the condition known as Down syndrome. After his discovery, he renamed the condition trisomy 21 to more accurately express the disability. Dr. Lejeune received many international awards, including the Kennedy Foundation Award in 1962, and the William Allan Memorial Award from the American Society of Human Genetics in 1969, the highest distinction that can be granted to a geneticist.
Inspired by a deep belief that medicine has a duty to serve society’s weakest members and also that a “cure” for trisomy 21 would one day be found, Dr. Lejeune dedicated his life to research and caring for the intellectually disabled. His "21 Thoughts" perfectly capture the spirit of the Jerome Lejeune Foundation, which continues his work today by serving thousands of patients with trisomy 21.
1. Human genetics can be summarized in this basic creed: In the beginning is the message, and the message is in life, and the message is life. And if the message is a human message, then the life is a human life.
2. Life has a very long history, but each of us has a very definite beginning—the moment of conception.
3. A month after conception, a human being is one-sixth of an inch long. The tiny heart has already been beating for a week, and the arms, legs, head and brain have already begun to take shape. At two months, the child would fit into a walnut shell: Curled up, she measures a little more than an inch long. Inside your closed fist, she would be invisible, and you could crush her without meaning to—even without noticing. But if you open your hand, she is virtually complete, with hands, feet, head, internal organs, brain, everything in place. All she needs to do is grow. Look even more closely with a standard microscope, and you'll be able to make out her fingerprints. Everything needed to establish her identity is already in place.
4. Hate the disease, love the patient: That is the practice of medicine.
5. Again and again we see this absolute misconception of trying to defeat a disease by eliminating the patient! It's ridiculous to stand beside a patient and solemnly say, “Who is this upstart who refuses to be cured? How dare he resist our art? Let's get rid of him!” Medicine becomes mad science when it attacks the patient instead of fighting the disease. We must always be on the patient's side, always.
6. When parents are worried about a sick child, we have no right to make them wait—not even one night—if we can do otherwise.
7. Either we will cure them of their innocence, or there will be a new massacre of the innocents.
8. I see only one way left to save them, and that is to cure them. The task is immense—but so is Hope.
9. We will beat this disease. It's inconceivable that we won't. It will take much less intellectual effort than sending a man to the Moon.
10. The absolute superiority, the complete novelty of humanity, is that no other creature can experience a kind of complicity between the laws of nature and its awareness of its own existence. The ability to admire exists only in human beings. Never in the history of gardening have we seen a dog smell the scent of a rose. Nor has a chimpanzee ever gazed at the sunset or the splendor of a starry sky.
11. At universities, I have often seen extremely intelligent people holding conferences, nodding as they considered whether their children were some sort of animals when they were very young. But at the zoo, I have yet to see a conference of chimpanzees consider whether their children would grow up to be college professors!
12. It is not medicine we should fear, but the folly of mankind. Every day, the experience of our predecessors increases our ability to change nature by using its own laws. But using this power wisely is what each generation must learn in its turn. We are certainly more powerful today than ever before, but we are no wiser: Technology is cumulative, wisdom is not.
13. Fertilization outside the body—making a child without making love—and abortion—the unmaking of a child—are incompatible with natural moral law in varying degrees.
14. In modern democracies, which no longer refer to a higher moral law, upright citizens have an innate duty to aspire to laws that reflect what they believe to be best for society: That is the only duty incumbent upon them, and the only freedom they still possess.
15. 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.
16. The enemies of life know that to destroy Christian civilization, they must first destroy the family at its weakest point—the child. And among the weakest, they must choose the least protected of all—the child who has never been seen; the child who is not yet known or loved in the usual meaning of the word; who has not yet seen the light of day, who cannot even cry out in distress.
17. We need to be clear: The quality of a civilization can be measured by the respect it has for its weakest members. There is no other criterion.
18. To avoid overheating the debate, I will go much further back—to the Spartans, the only ones to eliminate newborns that they believed would be unable to bear arms or beget future soldiers. Sparta was the only Greek city to practice this kind of eugenics, this systematic elimination. And nothing remains of it: It has left us not a single poet, not a single musician, not even a ruin! Sparta is the only Greek city that contributed nothing to humanity! Is that a coincidence or is there a direct connection? Geneticists wonder, “Did they turn stupid because they killed their future thinkers and artists when they killed their less-than-beautiful children?”
19. Ending an inconvenient life is a terrible thing. And age is no protection against this threat: The elderly are as much at risk as our youngest children.
20. The genetic makeup of a human being is complete from the moment of fertilization: Not a single scientist doubts it. What some of them want to debate is the amount of respect due to an individual based on her stage of development. If a human being is a half-inch long, does she deserve respect? If she is 20 inches long, does she deserve 40 times more? People who use years and pounds to quantify the respect due to another human being are not well intentioned.
21. We call on all people of good will to ensure that health protection is grounded in a renewed spirituality: Every patient is my brother.
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