Tuesday, January 15, 2008

The ACOG has heard us: some progress made on pre-natal screening

Executive Director
National Down Syndrome Congress

(January 15, 2008)

" In its December 2007 Practice Bulletin 88, the American College of Obstetricians and Gynecologists (ACOG) expands on its position regarding invasive prenatal diagnostic testing for Down syndrome, which was originally outlined in its January 2007 Practice Bulletin 77. The main recommendation is "invasive diagnostic testing should be available to all women"Maternal age of 35 years alone should no longer be used as a threshold to determine who is offered screening versus who is offered invasive testing." Though the guideline states "prenatal diagnosis is not solely performed for assistance in the decision of pregnancy termination," the implication is that a baby with Down syndrome is a bad outcome that should be avoided.

Furthermore, there is no scientific evidence presented to support the recommendation which is based primarily on 'consensus and expert opinion', the weakest level of support. Of equal concern is that the authors of ACOG Practice Bulletins 88 and 77 are neither named nor are any potential financial conflicts of interest disclosed. This omission calls into question the process by which 'expert opinion' is transformed into public health policy.

Practice Bulletin 88 does suggest referral to the NDSC, NDSS or local organizations, when a diagnosis of Down syndrome is made. Although this is a step in the right direction, there is still much work to be done to convince the medical community of the worth of people with Down syndrome.

The National Down Syndrome Congress (NDSC) believes that individuals with Down syndrome have innate worth and should be treated with dignity and respect. The NDSC calls upon ACOG to require that all patients be given, without prejudice, information that accurately reflects the realities of a life with Down syndrome. Furthermore, ACOG and other health care organizations should ensure that doctors and other health care professionals are adequately trained to provide accurate, non-directive information.

Our goal is not to limit a woman's access to prenatal screening, nor to limit her reproductive choices. Rather, it is to ensure the screening and diagnostic process is done in the context of an informed personal conversation with the woman's doctor, during which current, balanced information is given about the reality of Down syndrome today. In this way, we hope decisions can be made based on knowledge and not fear.

The new statement by the American College of Obstetricians and Gynecologists is better, in that it actually recommends that when a prenatal diagnosis of Down syndrome is made,that patients are given information about National Down Syndrome Congress and the National Down Syndrome Society. This is, I firmly believe the result of the hard work of thousands of individuals with Down syndrome, and the families who love them. Even the New York Times took note of our efforts, as they report here.
The book "Gifts", the first ever Carnival of Down syndrome, the movie, "Mr. Blue Sky" and articles like my "A Special Mother is Born" have begun to make a difference in how Obstetricians will talk to their patients carrying a child with Down syndrome. I hope my upcoming book on Catholic mothers of special needs children will add to the discussion of how these people have blessed the world with their presence.
The Prenatally and Post-natally Diagnosed Conditions Act, S803 would codify into law the rights of such parents to receive a fair discussion of exactly what life with Down syndrome is like. It's the very least you would expect in a free society.


GrannyGrump said...

Let's not forget the wonderful Celebrate! New Parent Support Packages available from Band of Angels, and the beautiful dolls from Downi Creations.

Anonymous said...

i was always worried having scans & think they are intrusive to the baby..