New Guidelines recommend universal screening for Down Syndrome.

[Midlodemocrat]

I'm curious as to what DUers think about this. One of my best and dearest friends has a beautiful little daughter with Down Syndrome who is exceptionally high functioning and she is really upset about this.

OTOH, I have a neighbor who has routinely indicated that she would have terminated the pregnancy had she known she was carrying a child with Down Syndrome and has resented him from the day of his birth.

Here's a link to the article about the guidelines.

Link requires registration: Here are the first four paragraphs.

January 4, 2007 — The American College of Obstetrics and Gynecology (ACOG) recommends that all pregnant women, regardless of their age, be offered screening for Down syndrome, according to new guidelines published in the January issue of Obstetrics and Gynecology.

"Historically, maternal age 35 years or older at the time of delivery has been used to identify women at highest risk of having a child with Down syndrome, and these women have been offered genetic counseling and amniocentesis or chorionic villus sampling (CVS)," write Ray Bahado-Singh, MD, Deborah Driscoll, MD, and colleagues, of the ACOG Committee on Practice Bulletins — Obstetrics, the ACOG Committee on Genetics, and the Society for Maternal–Fetal Medicine Publications Committee. "Biochemical serum screening for Down syndrome in women younger than 35 years was introduced in 1984, when an association between low maternal serum alpha-fetoprotein (AFP) levels and Down syndrome was reported... The practice of using age cutoffs to determine whether women should be offered screening or invasive diagnostic testing has been challenged."

These guidelines were developed to review and evaluate the best available evidence for the use of ultrasonographic and serum markers for selected aneuploidy screening in pregnancy and to offer practical recommendations for implementing Down syndrome screening in clinical practice.

In recent years, numerous markers and strategies for Down syndrome screening have been developed, as have algorithms combining ultrasound and serum markers in the first- and second trimesters. Various markers have included human chorionic gonadotropin (hCG) and unconjugated estriol used in combination with maternal serum alpha-fetoprotein levels.

[Anarcho-Socialist]

1. I think every citizen deserves the right to choose

and not to be judged for that decision.

[Midlodemocrat]

4. I agree. I think it's a good thing, but I was wondering

if others were as unhappy as my friend about it. She knew that she was carrying a child with Down Syndrome and chose to have her and wouldn't have it any other way.

[jwirr]

23. I agree that each woman has the right to chose. What worries me

is the possibility that this would somehow become a mandatory practice that would require the mother to abort. One of the biggest problems with these test and aborting a downs syndrome child is that they do not show the degree of disability. My daughter does not have DS but she has many friends at her day activity center who do and I have never met one whom I would abort. They are loving, giving, eager to learn and work and they are an al round blessing to those around them. I consider myself privileged to be able to get to know these people. A professor from Germany who grew up during WWII said that it is the disabled who teach us true compassion.

[Anarcho-Socialist]

25. I don't think the report

is illustrating any sort of move to mandatory abortion, but rather recommending screening for Downs. Requiring a mother to abort her baby against her will is a violation of her human rights. I certainly agree with you that mandatory abortion is most undesirable but seeing it as an eventuality is a mighty leap at this point.

[ThomCat]

2. I think screening should be available

for people who like your neighbor who maye shouldn't be parents anyway. But I don't think it should be mandatory.

What public health purpose is served by mandatory screening?

[Midlodemocrat]

7. I don't think it's mandatory, just recommended

like they recommend the AFP and some other testing to gauge how well the pregnancy is progressing.

I guess I just didn't think it was a 'bad' thing, until my friend got so upset about it. Which is weird to me, because she knew and still chose to have this baby. And, she is beyond adorable. She's enriched the lives of everyone who has come into contact with her.

I was babysitting her last week, and she was looking through the yearbook with me and every.single.kid, she says 'see him, that's my friend'...'see her, that's my friend'. There's not a mean bone in her body.

So humbling.

[lumberjack_jeff]

3. Research indicates that there is a genetic component to obesity.

Maybe universal screening for fat is equally merited.

I foresee a time in which newly pregnant moms are presented with a genetic profile of their offspring which includes, along with disabilities and genetic diseases; bloodtype, eye and hair color, intellectual aptitude, projected weight and height, etc.

Call it what it is - eugenics.

[Midlodemocrat]

5. I have a little different take on it.

Obviously, creating a 'perfect' child in the womb smacks of eugenics, but having had personal knowledge of a family that was rendered so unhappy by the birth of one of their children, I wonder if the availability of such screening wouldn't be a bad thing.

When I was pregnant with my son, one of the tests returned that suggested Down Syndrome. We had an amnio and went through genetic counseling, becuase interestingly, it turns out that my husband is a Tay Sachs carrier.

Anyway, I had decided not to abort the baby regardless of the problems presented, my reason for going through with the amnio was to make sure that the baby would not be damaged in a normal vaginal birth, having had to have an emergency c-section with his sister.

Turned out that he was fine, which I have to say, did put my mind at ease for the rest of the pregnancy. Maybe that result alone is worth testing everyone?

[lumberjack_jeff]

11. You chose genetic testing.

Enforced universal testing means that you are expected to act on the results of that testing.

The image at the bottom of this post is the logo of the Autism Society of America. I have a son who has Autism. My life has been enriched by him, and I am must admit that if I had been told during my wife's pregnancy that the baby had autism (setting aside for a moment the possibility that it may be an environmental disability) I would have been in favor of abortion.

Knowing what I know now, it would have been a huge mistake.

[Midlodemocrat]

12. I just posted the first four paragraphs because the link

requires registration. I don't see where it says that the testing is mandatory.

BTW, I do a lot of volunteer work with austic kids and treated them for years. There is a wide range of abilities on the spectrum, I can easily see how your child has enriched your life.

[lumberjack_jeff]

16. Then I would suggest editing the title of your OP. n/t

[Midlodemocrat]

18. ? It says 'recommend' not mandates.

[lumberjack_jeff]

26. It also says "universal". As in, the AMA is recommending universal testing.

Universal=everyone.

[Midlodemocrat]

27. Right. And the reasons are that more Down Syndrome babies

are being born to women outside the 'AMA' group, therefore, they are recommending offering the test to everyone.

When someone is pregnant, they are not required to take any test at all. Heck, they don't even have to see an OB.

These guidelines are trying to inform those women under 35 that they are now the dynamic having more babies with DS, simply because they aren't being tested.

[wuushew]

8. So what?

how is your reality or your libertarian existence affected by the potential life that people choose or choose not to bring into the world?

Nobody is being sterilized and nobody is being gassed so I can't say I really care what physical characteristics people choose to breed into their offspring. How does reproductive freedom differ from other liberties?

[lumberjack_jeff]

14. What part of "universal" are you confusing with "choose"?

If society decrees that each pregnancy should be tested for something, it's apparent that society expects the parents to act on that information.



The caption of this image says (paraphrased) "this person costs 60,000dm to support each year. This is YOUR MONEY. Support the Nazi party."

[wuushew]

24. How is that poster different from anti-smoking ads?

the problem with the Nazis is that they went beyond propaganda to mass execution.

Do we not provide the protection of laws and welfare to those currently disabled in the United States? You seem to be implying that any opinion of those not yet conceived is somehow deeply insulting to the generation of those currently living.

I find your argument full of emotional absolutism. Is tall good? Is short bad? Is blond superior to red hair? If you were a true relativist you would realize that these are meaningless distinctions and simply describe people neutrally.

Also I disagree with your objection to the universality of pregnancy screening. Perhaps the expanded scope means that no particular group of women is statistically separated from the efficacy of the screening as previously thought. Instead of being a medical conspiracy, it is instead another source of information by which women may use in their course of pregnancy. In any case these are not forced screenings.



There aren't even true mandatory vaccinations in this country. The reproductive tyranny you speak is illusionary.

[lumberjack_jeff]

28. I fail to see how they are similar.

Humans have a build-in concept of beauty and perfection. Imperfection, non-uniformity, is the essence of diversity. Genetic testing will increasingly enable people to avoid that imperfection in their offspring.

The AMA recommends that all kids be vaccinated for the purpose of eradicating diseases such as smallpox. The AMA is now recommending that all pregnant women be tested for Downs syndrome for the purpose of discouraging the birth of children with Downs.

To my knowledge, this is the only example of the medical establishment proposing universal testing meant to discourage a certain category people from being born.

Having this testing available is one thing. Decreeing that everyone should have it is something else.

You seem to be implying that any opinion of those not yet conceived is somehow deeply insulting to the generation of those currently living.

When it's the opinion of the medical community that they shouldn't have been born, then I hope I'm doing more than implying it.

[Kerrytravelers]

6. I have taught Downs kinds in my classroom.

While I am pro-choice, I find mandatory screening a bit much. I guess it's up to each person to decide, but I know it wouldn't cause me to terminate.

[Midlodemocrat]

9. Me neither. and I don't think it is mandatory.

Just recommended. A lot of the tests one takes during pregnancy can be refused.

[Kerrytravelers]

21. Oops. You are correct. I must pay closer attention!

:hi:

[Midlodemocrat]

22. LOL. My fault. I posted the link, but it requres registration

so I just posted the first four paragraphs.

I think it is interesting for sure. And, I wonder if the amnio is going to be the gold standard for testing now that CVS has pretty much been abandoned.

[proud2BlibKansan]

30. Everyone on this thread seems be ignoring the value of early intervention

for any child with a disability. I realize that some parents may be more likely to abort their pregnancy if they find that the baby has Down's, but that wasn't my first thought when I heard about this.

Educating parents is the first step in meeting the needs of kids with disabilities. The earlier that process starts, the better. So I think this screening is a great idea.

[Midlodemocrat]

32. As do I.

Like I stated in the OP, my neighbor has had a terrible time dealing with her Down Syndrome child, while my friend hasn't had nearly the tough time because her child is extremely high functioning.

It seems to me that if 18 years after the fact, the mother is still stating that if she had known she would have aborted, that is a tragedy.

My friend DID know and chose to continue the pregnancy. It's almost as though this is more a matter of pro-life versus pro-choice than raising a disabled child.

[Book Lover]

10. Voluntary screening is already available - why make it mandatory?

Is there another method of testing other than an amnio (which carries a risk of miscarriage; plus I can't imagine many women fond of the idea that you must have a long, hollow needle plunged into you when you get pregnant because the government forces you to...)?

[Commie Pinko Dirtbag]

36. Is it free? And will the proposed mandatory one be? -nt

[Horse with no Name]

13. As many know

I am a nurse. I worked at a renowned Children's Hospital where we saw it all.
One of the nurses that I worked with was pregnant.
She found out that her baby had a very high probability of having Down's.
She opted to keep the baby because she had been exposed to other children having Down's and felt it wasn't a good enough reason to end the pregnancy.
FOR HER.
I can't expect to make other people's choices for them, I don't have to walk in their shoes.
If a parent KNOWS that they would not abort--no matter what--then there really is no reason to do these tests. If it makes a difference, then by all means, have the test done.
I believe in choice. 100%.
I will support the choice no matter what an individual factors in as their reasoning.

[Midlodemocrat]

15. Exactly.

When pregnant with my son, I found out that he had a very high probability of having Down Syndrome.

I had an amnio, mostly because I wanted to know and partly because I wanted to make sure it was okay to go ahead with a vaginal birth.

I never entertained the idea of abortion, not once. I was married, already had a healthy child and owned a home.

He turned out healthy, which was a blessing, but I think he would have been a blessing either way.

[seabeyond]

17. as long as it stays voluntary and not a law passed insisting all get tested

i was in the age group where it is suggested. i didn't want the test. i didn't want to abort even if there was a problem. for more reason than a society wanting all tested for whatever reason. i would have been real bothered if forced to test. worst thing for a preg is to stress the mother. was no ones business but mine if i tested. i said i didn't want the test and doctor totally supported me, stating that if i planned keeping baby regardless no reason to test

let a doctor suggest it giving the option to the mother. she can always say no

[Midlodemocrat]

19. I believe that the entire guideline came from the

result of most children with Down Syndrome being born to mothers under 35 who are not high risk because of 'Advanced Maternal Age'.

More and more Down Syndrome babies are being born to younger mothers because they aren't offered the test due to their low risk.

[seabeyond]

20. i wasnt offered test on first baby at 33, was on the second at 36. offer

to all, i dont care. dont force it on a mother.

[Midlodemocrat]

29. One other point and then I'll shut up. In order to get insurance to pay

for a procedure, it's often a requirement that 'guidelines' be established by whatever professional organization the procedure falls under.

When my husband had his open heart surgery in June, he also needed a defibrillator implanted. We had to wait 90 days because the American Cardiothoracic Board had decreed that in some cases, the heart gets stronger after bypass and no defibrillator is needed.

In order to get one, we had to wait 90 days from the date of surgery. In addition, insurance would not have paid for it ($125,000) had we gone ahead and had the surgery prior to the 90 days.

I think that is probably one of the reasons for the new guidelines.

[pitohui]

33. i suspect you are right

if not a necessary and customary treatment, then the family has to pay and probably can't

the people most likely to be financially destroyed by having a child who will never be independent will be the ones unable to get advance warning

i'm surprised so many in this thread think knowledge is bad but it takes all kinds and that's their choice -- as long as it isn't stealing choice from other women

[pitohui]

31. i believe knowledge is better than ignorance

i support universal screening

most down's syndrome folks are NOT high functioning and it's a life sentence for the parents, not all of whom may have the financial resources to deal with something like this, i daresay the majority of people don't have the emotional resources to deal with something like this

a woman should have the right to choose when and if to have a baby, and she should be able to take every step needed to give her the best chance to have a healthy baby

i'm aware that "misery loves company" but the idea that because so-and-so has a down's syndrome child that new children should be created with this disease forever is a sad comment indeed on human psychology


and the idea that they're all sweet and harmless and it's sort of like adopting a kitten that never grows up or dies before the parent is fairly sick in my view -- but again -- whatever -- i would simply suggest that down's syndrome children do grow up and have sexual urges that they can't control, they are not guaranteed to be neutered little toys who exist to teach us "compassion"

[Dorian Gray]

34. I believe that it should be up to the pregnant woman

to determine whether she wants her child screened for Down's Syndrome. I would not terminate fetus who was determined to have Down's Syndrome, so the pre-screening, if I chose to have it, would only be used to prepare me for that potential outcome.

[gollygee]

35. I only had the screening when I was pregnant

But I think I might very well have aborted if I'd found out that our baby had Down syndrome. I would have liked the test even though I wasn't at the age where it was recommended because I would have liked the security of knowing for sure.

I think women should be offered the test but they shouldn't have to take it if they don't want to.