Pre-natal genetic testing threatens lives

Online Editor| comments | Print this pagePrint | Email this pageShare
blog
A French bio-ethics bill shows why we must protect the lives of unborn children with Down syndrome everywhere.

Guest blog post by Leticia Velasquez

Today the French government holds the fate of thousands of innocent lives in their hands. The French parliament is considering a bill mandating that health care professionals offer universal pre-natal testing for Down syndrome.

When a diagnosis of Down syndrome is given to a pregnant woman in France, there is a 96 percent abortion rate. Most women who are tested are older mothers whose chances of conceiving a child with Down syndrome are statistically higher, but most babies with Down syndrome are born to younger women because of their higher birth rates. They have not been routinely tested until now.

Offering pre-natal testing to all pregnant women in France will end the lives of thousands of unborn children whose only crime is that they have an extra chromosome.There are those who believe that French society would be improved by eliminating such individuals, and their opinion seems to be gaining ground. Now this type of eugenics which existed de facto in the 96 percent abortion rate, is about to be codified into policy of the government of France.

The eugenics campaign to eliminate those with Trisomy 21 was under way in France in the 1960’s. Clara Lejeune Gaymard, daughter of French geneticist Dr. Jerome Lejeune, who discovered the cause of Down syndrome and whose cause for canonization was opened in 2007, vividly recalls the day that this devastating reality hit home for her family:

“I remember it so clearly. I was 10 years old, and, one day, [Dr. Lejeune] came home for lunch. The day before, on television, there was a movie about a family where a woman had a child with Down syndrome, and she wanted to abort, and she couldn’t do it then. After, there was a debate about abortion of the diseased children.... A boy came to his consultation with his mom, and he was crying, and my father said, “Why are you crying?” And his mother said, “He saw the movie, and I couldn’t stop him crying.”...Then he jumped in my father’s arms, and he was only 10 with Down syndrome. He said, “You know, they want to kill us. And you have to save us, because we are too weak, and we can’t do anything.” [My father] came back home for lunch, and he was white, and he said, “If I don’t protect them, I am nothing.” That’s how it started. And then his career came down. He didn’t have money for his research. He was like a pariah, and so on, but he accepted that because he thought he was doing that which was his duty. “

Dr. Lejeune accepted the sacrifices and humiliation which accompanied the role of protector of those with Down's syndrome and spent the rest of his career searching for a cure for Trisomy 21 until his death in 1994. Even on his deathbed, he apologized for abandoning those he called his “little ones” before finding a cure.

His family took up the baton and formed the Jerome Lejeune Foundation in Paris to continue funding research on Down syndrome and to treat thousands of patients. The Foundation is leading a campaign against this legislation with a petition (in French; see English translation on my blog). The Foundation also just opened a U.S. branch where they fund 94 ongoing research projects.

There is a cruel irony in the timing of this legislation; just as life has never been better for those with Trisomy 21, the French governments proposes measures which may lead to their extinction.

Scientists in America and Europe are closing in on groundbreaking therapies to make the learning and memory of those with Down syndrome completely normal, yet parents who have received a pre-natal diagnosis of Down syndrome are not likely be told this by their health professionals. In the United States, the abortion rate for those receiving diagnosis is 92 percent.

Parents will not be told of the full, satisfying lives people with Down syndrome are leading now--how they are participating in sports, work, media, social events, and relationships. It is more probable that they will hear a coldly clinical list of symptoms and dire prognoses about Down syndrome without reference to the promising research which may make the cognition and memory of those with Down syndrome normal within a decade, or their growing list of accomplishments.

Instead, these vulnerable parents will be frightened by those whose prejudices against those with disabilities have been called by Lejeune, "Chromosomal racism." The century-old specter of eugenics has once again reared its ugly head in Europe. Will there be enough people of good will to say “no” to the “decline of civilization,” as Cardinal Archbishop Vignt Trois has urged.

“Toward what kind of society to we want to move?” he questioned in a recent press release (see it in French or the Google translation). “The type of society we prepare for our children depend on the answers we give to all these questions today?"


Leticia Velasquez is an advocate for those with Down syndrome and co-founder of KIDS (Keep Infants with Down Syndrome). She is a speaker and freelance writer, whose first book, A Special Mother is Born, will be published by WestBow Press this summer. She, her husband, and three daughters, the youngest of whom has Down syndrome, live in Conneticut.

Guest blog posts express the views of the author. They do not necessarily reflect the views of U.S. Catholic, its editors, or the Claretians.