Wouldn’t it be nice if the purpose of pushing prenatal testing for Down syndrome was to assure that fetuses testing positive would be later welcomed into the world in full preparation for the medical challenges that sometimes arise in babies with the condition? Of course, the real point is to make sure that as many as possible are not allowed to be born. And now France is thinking very seriously about requiring that all pregnant women be tested regardless of risk factors–that is, legally requiring–not just recommending–a medical procedure so that no babies with Down slip through undetected. From the blog, Cause of Our Joy:
France already has an abortion rate of 96% once Down syndrome is detected through pre-natal testing, universal testing would be catastrophic to this population and to human rights in general, setting off a possible chain reaction throughout Europe. Below is a translation of the original letter from the Foundation Lejeune.
On May 25 and 26 of this year, the National Assembly [the lower house in the French Parliament] will resume its debates and votes concerning the proposed bioethics law. If the deputies follow the recommendations of the Senate and the Special Committee on Bioethics, the pendulum will swing, in the next few days, and France will implement a policy of eugenics with regard to infants with Trisomy 21 (Down syndrome.) Because all of us are vulnerable and called to show solidarity with those who are a little more so, we cannot accept this or let it happen.
Yea, gotta stop that 4% that make it through the eugenic filters! Liberté, égalité, fraternité, my right nostril.
I will try to check out this story further and report back.
HT: E. Haupt
Update: Commenter Raven says the bill would require that genetic testing be offered, not that it be conducted, with a link to the French Assembly bill. If anyone can speak French and would like to translate, that would be great.
But the purpose of the bill I think is as the blogger I quoted suggests–to increase the already sky high abortion rate of fetuses testing for Down, dwarfism, etc. There is a strong pre natal eugenic drive in the West and pushing for more testing serves that agenda. Of course, testing can also serve to make such births easier to prepare for, as Sarah Palin said her test did. But note, one Canadian medical leader worried that her lead would cause fewer women to abort Down babies:
But others fear Ms. Palin’s emergence as a parental role model sends a different message. As a vocal opponent of abortion, Ms. Palin’s widely discussed decision to keep her baby, knowing he would be born with the condition, may inadvertently influence other women who may lack the necessary emotional and financial support to do the same, according to André Lalonde, executive vice-president of the Society of Obstetricians and Gynaecologists of Canada. Dr. Lalonde said that above all else, women must be free to choose, and that popular messages to the contrary could have detrimental effects on women and their families. “The worry is that this will have an implication for abortion issues in Canada,” he said…
“It’s very dark,” said Krista Flint, executive director of the Canadian Down Syndrome Society. “They hear a lot about the medical conditions that are sometimes associated with Down syndrome. They hear about the burden … it places on children and a marriage. They hear about things like shortened life expectancy. They hear a lot about the challenges of a life with Down syndrome.” That’s why Ms. Palin has become an example that could possibly stem the tide of families who abort fetuses after a positive determination for Down syndrome, she said. “We know overwhelmingly the message families get is ‘Don’t have this baby, it will ruin your life,’ and I don’t think people would look at Sarah Palin and see a ruined life,” Ms. Flint said. “Regardless of politics, I think it’s a good example.”
I also believe that a societal expectation for that course–abort the “defective–is being forged. That is a major purpose behind these testing proposals and a reason why some loathe Palin so deeply–as we have discussed at length on several occasions.
May 22nd, 2011 | 7:26 am
The bill under consideration proposes that all pregnant women be routinely offered screening tests for conditions which might affect the course of their pregnancies. Women whose fetuses are found to be at risk are then to be referred to specialists for prenatal diagnosis if this is something they desire. I don’t think the bill itself makes any specific reference to Trisomy 21. It just happens to be one of the conditions screened for.
Early prenatal diagnosis gives parents information – sometimes this results in the elective termination of pregnancies but it also frequently results in the early detection and successful treatment of other conditions (such as rubella and toxoplasmosis) which might have threatened the unborn child.
The 96% statistic seems unbelievably high – and I can’t help thinking that if virtually all French women choose to terminate their pregnancies on discovering that their fetus has Down’s ones primary response should definitely not be “don’t tell them”. The focus should rather be on spreading the message about the reality of living with Down’s Syndrome and caring for those with the condition. Parents should have more information – not less.
[Here's a draft version of the French bioethics bill. The relevant section is Article 9. Those of you who, like me, cannot read French, will probably have to run it through Google Translate.]
Wesley J. Smith Reply:
May 22nd, 2011 at 9:35 am
Offering is not the same thing as requiring. That’s a different matter, if true.
But the 96% seems very plausible. In the USA the abortion level is 90% and evidence has shown that genetic counselors tend to push the abortion option. Ted Kennedy and Sam Brownback co sponsored a law to ensure neutrality in counseling, which you can learn about by doing an SHS search. I believe there is an intent to wipe Down children from the face of the earth. I remember when Sarah Palin gave birth to Trig and it made news, a major doctor in Canada worried that her lead could lead to more parents making the life choice. I covered that here, too.
Raven Chukwu Reply:
May 23rd, 2011 at 9:04 am
@Wesley J. Smith, I think my reading of the new French bill is almost certainly correct. In 2007, the American College of Obstetricians and Gynaecologists revised its screening guidelines to recommend that chromosomal screening be offered to all pregnant women. Many disability rights and pro-life advocacy groups at the time also complained that it was a “search and destroy” mission and portrayed it as an attempt to introduce mandatory testing.
The author of the Cause of Our Joy blog may have her heart in the right place, but she doesn’t appear to be too keen on fact-checking. The post Kathy linked to below contains the astonishing claim that the NIH is “yet to fund one dollar of research into the treatment of Down Syndrome”. This is patently false. The NIH has been funding research into the causes of Down Syndrome and the treatment of its complications since the 1960s.
Leticia Velasquez Reply:
May 23rd, 2011 at 11:39 am
@Raven Chukwu,
Sorry Raven, I may have jumped the gun on whether the testing was offered or required,although I fear that requiring it will certainly follow.
You are misinformed about the NIH funding. I recently received an email from them wanting to know whether I felt that they should finance research for improving the cognition of those with Down syndrome.
Until parents and the Congressional Down Syndrome Caucus made an issue of it, the NIH didn’t even have a research plan in place. Thanks to them, there is a plan, and perhaps funding to improve the lives of those with Down syndrome.
The NIH funding you refer to is pre-natal testing.
Raven Chukwu Reply:
May 23rd, 2011 at 1:25 pm
@Leticia Velasquez
You may argue that, on a per capita basis and in comparison to other genetic disorders, Down Syndrome research is under-funded but you may certainly not argue that it receives no NIH funds.
According to Brian Skotko, Chair of the Clinical Advisory Board of the Down Syndrome Society, the NIH devoted $23 million worth of funding to Down Syndrome research in 2003 and $17 million in 2008. The NIH itself estimates that it will spend $22 million on Down Syndrome research in 2011 – and this is all apart from the funds devoted to develop safer and more accurate methods of prenatal screening and diagnosis.
You write that “until parents and the Congressional Down Syndrome Caucus made an issue of it, the NIH didn’t even have a research plan in place” – but the NIH has been conducting research into Trisomy 21 for decades. Most biomedical research does not take place under the direction of centrally controlled “research plans”. These plans are usually drawn up only following public or political pressure (the NIH Down Syndrome plan was produced following a series of congressional directives).
Thus while there are centrally coordinated plans for cancer, AIDS, Parkinson’s disease, and (most recently) Alzheimer’s research, there is almost certainly no central NIH “research plan” for less common diseases which lack vocal patient advocates. The absence of an NIH “research plan” for a disease condition does not indicate a lack scientific interest in the condition or an absence of funding.
Leticia Velasquez Reply:
May 23rd, 2011 at 11:46 am
@Wesley J. Smith, Well said, Wesley. I was a proponent of the Kennedy-Brownback Bill which was passed unanimously by both houses of Congress, yet has still not received the $5m funding it requires. It would provide if not neutrality at the time of an adverse diagnosis, some pamphlets, referrals to support groups and adoption agencies to help frightened parents cope with their child’s diagnosis. Certainly if the bill was worth voting for, it was worth funding.
Wesley J. Smith Reply:
May 23rd, 2011 at 12:15 pm
Leticia: I was not aware of the funding problem. Thanks. Probably because Kennedy has died and Brownback is out of Congress. Not enough voters with personal connection to Down for the politicos to care.
May 22nd, 2011 | 10:30 am
This is simply ridiculous. It’s government intervention gone too far.
It’s as though they want paternalism to take over (i.e. “I’ll torture you for your own good.”).
May 22nd, 2011 | 10:51 am
Do *you* want to contribute *your* net worth to support all those useless parasites-to-be cradle-to-grave as little more than household pets…??
Wesley J. Smith Reply:
May 22nd, 2011 at 11:14 am
Big Don, small heart.
HCM Reply:
May 22nd, 2011 at 9:57 pm
@Big Don, Veil of Ignorance, Don. Veil of Ignorance. Look it up. Please.
Leticia Velasquez Reply:
May 23rd, 2011 at 11:46 am
@HCM,
[Big] Don, spoken like a true eugenicist, look it up.
kathy Reply:
May 23rd, 2011 at 2:26 pm
@Big Don, ‘useless parasites?’ ‘household pets”? amazing. What a vile thing to think, let alone say. Hitler would be proud of you, “Big” Don. He, too, had a program to deal with ‘useless eaters’…and we all know how that turned out for him (and his country)
I have a 13 yr old son with Down syndrome. He adds so much to my life every single day, and I thank God for him. No, I did not always feel that way..when we found out via a prenatal ultrasound that our child had some markings that are associated with Ds, we were devastated-but I can honestly say that life with and for him is nothing like I feared it would be. He is funny, smart, loving (and greatly loved) and a valuable member of our family and community. He has a tremendous will to work and learn. You, sir, are far more disabled than he will ever be, imo, because he doesn’t hate anyone…he has never looked at anyone else and judged them as being unworthy to live, as you do. He may learn more slowly than other kids his age, but he could teach us all when it comes to compassion and knowing how to love.
May 22nd, 2011 | 12:06 pm
“That in that country if a man falls into ill health, or catches any disorder, or fails bodily in any way before he is seventy years old, he is tried before a jury of his countrymen, and if convicted is held up to public scorn and sentenced more or less severely as the case may be. There are subdivisions of illnesses into crimes and misdemeanours as with offences amongst ourselves—a man being punished very heavily for serious illness, while failure of eyes or hearing in one over sixty-five, who has had good health hitherto, is dealt with by fine only, or imprisonment in default of payment.
But if a man forges a cheque, or sets his house on fire, or robs with violence from the person, or does any other such things as are criminal in our own country, he is either taken to a hospital and most carefully tended at the public expense, or if he is in good circumstances, he lets it be known to all his friends that he is suffering from a severe fit of immorality, just as we do when we are ill, and they come and visit him with great solicitude, and inquire with interest how it all came about, what symptoms first showed themselves, and so forth,—”
Samuel Butler in his dystopia, Erewhon. Not so fantastic, these days.
May 22nd, 2011 | 12:52 pm
“useless parasites”? Now _that’s_ hate speech.
May 22nd, 2011 | 2:41 pm
Big Don-No, I don’t want my net worth to support useless parasites. Please eradicate yourself from the face of the earth.
May 22nd, 2011 | 10:16 pm
Here is all the information parents need to know:
all human life is sacred…..God has a plan for all
of us. We are all a reflection of God, big or small, fast or slow. All of life is precious to be cherished.
I am not Sarah Palin but God chose me to have a beautiful son who was made perfect by love with Down’s Syndrome. The tests are for one reason and that is to kill a living creation of God if he or she is not perfect in the eyes of the world. Abortion is Murder ! Pure and simple. I am so honored to have been chosen to have a child born with Down’s Syndrome. He gave more to us than we gave to him. The student taught the teachers. The stone rejected was to become the cornerstone. Soon
the world will no longer hold these precious angels of God with the puriest of hearts because
90% are murdered before they take their first breath. If anyone is listening and in doubt please let me reassure you. It is worth every ounce of energy and love given to have a chlld with Down’s Syndrome. Words can’t explain the simplicity and pure love that is present in your life when one has a achild with Down’s. All my other children were better for having a sibling such as John. my heart breaks at the thought of what these parents who kill their children, miss !
Words can’t do it justice. To say nothing of the guilt. Beware of false prophets.
May 22nd, 2011 | 11:42 pm
Ay, caramba, Wesley!
The name of the blog is CAUSE of our Joy, not Curse of our Joy!!
May 22nd, 2011 | 11:50 pm
Wes,
You mention the Kennedy-Brownback bill. Unfortunately, however, according to a Cause of Our Joy blogpost posted a couple weeks earlier, the Kennedy-Brownback initiative is NOT BEING FUNDED. On the other hand, the search-and-destroy testing IS being funded.
http://cause-of-our-joy.blogspot.com/2011/05/new-booklet-for-parents-whose-children.html
Leticia Velasquez Reply:
May 23rd, 2011 at 11:49 am
@Kathy from Kansas,
That’s right, Kathy and now our hero, Sam Brownback is your governor, so we count on Rep Cathy McMorris Rogers (R-WA) to lead the fight to get that funded. She has a son with Down syndrome and started the Congressional Down Syndrome Caucus.
May 23rd, 2011 | 11:14 am
Thanks, [Big] Don. I’m using your ignorance to help raise money for the National Down Syndrome Congress.
May 24th, 2011 | 8:16 am
The law requires that the doctor propose prenatal testing. Paragraph II of Article 9 reads: “Des examens de biologie médicale et d’imagerie permettant d’évaluer le risque que l’embryon ou le fœtus présente une affection susceptible de modifier le déroulement ou le suivi de la grossesse sont proposés à toute femme enceinte au cours d’une consultation médicale.” Approximate translation: “Examinations … that allow one to evaluate the possibility that an embryo or fetus has a condition that may modify the evolution or the monitoring of the pregnancy are to be proposed to every pregnant woman during a medical consultation”. The sentence is very vague about which tests are concerned, and about which “conditions” are to be tested for. If the law passes, a ministry will probably draw up a lists of examinations that must be proposed.
If the above sentence refers simply to ultrasound, practically all pregnant women in France have three per pregnancy. (I know this because my wife is nearing the end of her third pregnancy in France.) In this case, the law would make obligatory what is nearly always done. But other tests could be added because the sentence is so vague.
Reading a bit further in the blog “Cause of our joy”, I found this: “… obliging the doctor to propose prenatal diagnosis to all expectant mothers would lead us from a de facto situation of eugenics to a legal system of eugenics …” This seems like an accurate description of the situation. The text of the law doesn’t mention trisomy 21, but it is probably fair to say that trisomy 21 is being targeted, because doctors always look for signs of it during ultrasounds, unless you tell them not to.
May 24th, 2011 | 10:01 pm
What about after disabled babies are born? How many survive the practice of euthanasia that is known to exist in France?
http://www.thelancet.com/journals/lancet/article/PIIS0140-6736%2808%2960412-2/fulltext
May 28th, 2011 | 4:01 am
For those who have had a prenatal diagnosis of Down syndrome and are seeking support as they move forward with their pregnancy, an outstanding new eBook is available at no cost from DownSyndromePregnancy.org: Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome, by Nancy Iannone and Stephanie Meredith, described as a “practical guide for expectant moms.”
For parents who have received a prenatal diagnosis of Down syndrome and are weighing options about their pregnancy, the Down Syndrome Consensus Group has approved a newly revised edition of the excellent informational booklet, Understanding a Down Syndrome Diagnosis, previously available from Canister Books, now available at http://lettercase.org/products
Down syndrome associations, parent groups and individuals may wish to make each of these resources available at their meetings and conferences. Having extra copies available at public events for mainstream families, and raising public awarenss via newspaper and television interviews and resource lists will help extended family and friends of expectant and new parents spread the word about their availability. Most of us were ‘civilians’ when we first heard the diagnosis of a baby with Down syndrome. We are fortunate that these publications are now available to share with those who follow us on the journey.
Every OB/Gyn’s and pediatrician’s office should have brochures for patients providing information on these resources. Every time I read statistics about the rate of ‘terminations’ of pregnancies due to a diagnosis of Down syndrome, I am more painfully aware that women who identify themselves as ‘pro-life’ may be an equal percentage of those choosing termination, only mildly moderated by the knowledge that an equal number of those who identify themselves as ‘pro-choice’ probably chose to bring their beautiful babies with Down syndrome into the world.
We can only pity the trolls who make negative comments about the value of children with Down syndrome and the contributions teens and adults bring to our schools and communities. I assume that our tax dollars are spent on drug treatment programs and incarceration for them or their children who unfortunately have probably been brought up with a lack of love and appreciation themselves.
Siblings who speak up for their brothers and sisters with Down syndrome always touch my heart. Did you see this video? http://t.co/PSRA4PQ
I have found advocates for people with Down syndrome across the spectrum of personalities, economic status, education, ethnicities and religions (or lack of religion), including some very rough, tough and otherwise unexpected people. My son has brought wonderful people into my life and the life of his sister and our extended family. I can’t imagine what our lives would have been without him!
PS The French people in my family and among our friends are very strong advocates for my son. So are people from cultures that are described as not accepting of children or adults with disabilities. I have great hope and do whatever I can to spread awareness and advocate for education and support for people with Down syndrome throughout their lifespan.
May 28th, 2011 | 8:30 pm
The technical difference between requiring prenatal diagnostic testing, and requiring that doctors offer such testing, is a distinction without a real-world difference.
My youngest was born fourteen years ago, and things have probably gotten even worse since then — but, even at that time, when my husband and I were in a Lamaze class for non-first-time parents, we were the ONLY couple out of the 15 or so couples there who had NOT had amniocentesis — even though all the other couples were younger (and thus lower-risk for Down’s) than we were!
The only reason we had not had amnio — nor any of the other prenatal diagnostics that were offered, there were several — was because I am both extremely pro-life and extremely well-informed in these matters. My point is not to boast, but to communicate to you that the combination of peer pressure, media pressure, and the natural instinct of most of us to just trust medical professionals, means that most women will have amnio if the doctor offers it, even if it is not legally mandated.
June 3rd, 2011 | 3:01 pm
[...] #3: Mandatory Testing for Down Syndrome Coming to France? Wouldn't it be nice if the purpose of pushing prenatal testing for Down syndrome was to [...]
July 4th, 2011 | 8:41 am
It is a great thing to do…it is unfair for a child to be born with desadvantages in life…he/she will never be able to be independant…mind you all the medical issues that he /she will face… medications, hospilatizations, and lets not talk about the social and emotianal problems that carry to be different in our societly -world wide- lets be realistic ..its the best thing for the unborn, parents and overall.
Wesley J. Smith Reply:
July 4th, 2011 at 9:42 am
Eugenics, in other words. Shame.
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