January 27, 2007 6:35 PM
The National Down Syndrome Congress on prenatal testing
After careful review of ACOG Practice Bulletin 77, the NDSC has issued the following statement:
FOR IMMEDIATE RELEASE
Contact: David Tolleson
770/604-9500 January 23, 2007ATLANTA – The National Down Syndrome Congress (NDSC) condemns recent recommendations by the American College of Obstetricians and Gynecologists (ACOG) that convey tacit approval for terminating pregnancies where the fetus has Down syndrome.
The recommendation for first trimester screening of all pregnant women is a change from the current practice of primarily screening women over age 35 who have a higher probability of having a baby with Down syndrome. Women under age 35 are also being screened, often without their full knowledge or consent.
Among the concerns cited by the medical doctors comprising NDSC’s Professional Advisory Committee:
The primary medical reason for first trimester screening is to encourage earlier diagnostic testing in “at risk” pregnancies, in order to facilitate early terminations. Other reasons for prenatal diagnosis, such as hospital selection and delivery management, do not require first trimester testing.
Based on ACOG’s figures, the recommended screenings will produce numerous false positives, potentially leading to unnecessary patient distress and possible termination of pregnancies where medical concerns do not exist.
All screening or diagnostic tests need to be fully explained to patients, who should be provided the opportunity to decline or give their informed consent for testing. If patients decline certain tests, physicians and other medical personnel should respect the individual’s wishes and not overtly or covertly pressure patients to undergo undesired screenings.
Recent studies by Dr. Brian Skotko, published in the American Journal of Obstetrics and Gynecology (2005) and Pediatrics (2005) note that many doctors are inadequately prepared to deliver a diagnosis of Down syndrome, and often use negative language or out-of-date information. ACOG’s recommendations do not address this situation, nor how it will be corrected.
Studies have shown that parents and siblings of children with Down syndrome overwhelmingly report that having a family member with that diagnosis has been a good situation. Early intervention and inclusive education have led to largely positive outcomes for children with Down syndrome. It is unacceptable that many obstetricians present negatives -- and seem to emphasize pregnancy termination -- rather than reporting the facts, which paint a much more positive picture.
Parents who receive a diagnosis that their fetus has Down syndrome should have the opportunity to meet a family that includes a person with the syndrome, a move in keeping with the spirit of the Kennedy-Brownback bill.
NDSC Executive Director David Tolleson notes that “Down syndrome is a serious diagnosis; however we have seen families thrive.” “We empathize with obstetricians who fear ‘wrongful life’ lawsuits,” Tolleson adds, “but the cure for that problem is tort reform, not preventing the births of a whole class of people.”
Jeff Mattson, a man with Down syndrome, agrees: “People with Down syndrome want to live life to the fullest.”
According to Tolleson, “the NDSC is here to support doctors in delivering a diagnosis and parents through the pregnancy, birth and life of their child.”
Posted in Down syndrome | Permalink
Comments
Barbara, what a coincidence that you should post this today! My family was over for supper and my father (an M.D.) was just discussing his astonishment at the false positive rate of the AFP test. The numbers were from the Canadian board of health--he said that if AFP test is taken alone, the false positive rate is close to 98%! It would seem utterly useless, yet it is being made standard procedure for even young healthy women like myself (I refused the triple screen which includes AFP). Basically the only reason the AFP is offered is to cover the backsides of docs who don't want to face "wrongful life" suits if they miss a "defective" child and didn't offer or advise abortion. The studies also showed that knowing a child has Down's Syndrome before they're born doesn't affect the outcome of the child's life, so the only reason for these tests is to give the opportunity to "terminate".
Is that crazy or what? How many beautiful babies are murdered because of these horribly high false positive rates?
Posted by: Margaret | January 27, 2007 9:55 PM
Wow.
Sorry, that's all I can say. It's just... wow.
Posted by: Amy Jane | January 28, 2007 3:14 AM
The blood based screening tests are pretty useless - but I think they like to team them up with the nuchal fold scan and then based on the combined results, they will move on to the amnio or Chorionic villus sampling (CVS) for more definitive results. While I cry for all of the perfect babies that may get caught up in this (and I do), please remember that these tests are more specifically targeting children with T21/Down syndrome (and other genetic differences).
Expecting parents are made to think that Down syndrome is such a scary "end-of-the-world" type of thing - when, in fact, it is the beginning of a whole new wonderful world.
Posted by: Candy Slice | January 28, 2007 9:24 AM
98%??? It's horrible enough that Down Syndrome babies are basically being deemed not good enough to live, but how many babies who would have been spared will now be killed? And after those babies are aborted will anyone take a minute to find out they were healthy, or will they just be disposed of? Will the presumed rate of Down Syndrome increase sharply because of all those undiscovered false positives, leading even more fearful mothers to accept / request the testing in order to terminate?
Posted by: Michelle Potter | January 28, 2007 10:58 AM
I don't think it's just fear of lawsuits. I think there's a lot of prejudice. Some people just don't think folks with Down Syndrom ought to be allowed to live. They want to wipe them out entirely.
I've blogged this, including a lot of links for Down Syncrome. Thanks!
Posted by: Christina | January 28, 2007 12:04 PM
Oh my goodness....thank you so much for posting this! I have had stuff about the American College of OBGYN decisions and about Canada's push for standard amnio's on women. : ( I linked to your blog on this!!! Such a good response from the NDSC!
BTW your new pic on your blog looks GREAT!!!!!
Posted by: shawnda | January 28, 2007 9:15 PM
I have a blog post from a couple of days ago that includes parts of an article by George Will and some snippets of info from Canada where they are "...recommending automatic amniocentesis for all women over 40." One has to wonder what that "automatic" means?
My post - The attack on kids with Down syndrome
Posted by: Candy Slice | January 29, 2007 7:27 AM
Thanks for posting this! I blogged about it here.
Posted by: Becky Miller | February 2, 2007 4:11 PM
Hi ladies, I think you're missing something here: not all parents-to-be are are upstanding a people as you are. What happens when people only want "healthy" kids end up with special-needs babies? Pretty bad things for those babies! The foster system is full of children like that, you can check on the Web in some states and it will break your heart. Think about it, if parents have so little love that they'll end a pregnancy on the *chance* that it's Down's baby, they would have been poor parents anyway! Also, you will be surprised at how many parents find out that yes, they *have* strength and love, and complete the pregnancy after a positive result! It is a very wonderful thing to see, and let me tell you, that early commitment makes them better parents, I have seen it myself.
Sign me a pediatric nurse who's seen a lot.
Posted by: Winter | September 7, 2008 11:41 PM
