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US groups are in denial over Down’s syndrome testing

Posted Jun 30 2009 5:47pm

I’ll be honest and state that when I first read Leticia Velasquez’s appeal for truth about prenatal testing as it relates to Down’s syndrome I wasn’t entirely sympathetic. I have subsequently changed my mind.

“They denied the 90% abortion rate of DS children and that prenatal testing and genetic counseling were done to seek and destroy our precious children with DS,” she wrote of the document drawn up by five groups – the National Down Syndrome Society (NDSS), National Down Syndrome Congress (NDSC), American College of Obstetricians and Gynecologists (ACOG), American College of Medical Genetics (ACMG), and National Society of Genetic Counselors (NSGC) – in an attempt to reach a consensus about issues about, and perceptions of, prenatal testing as it relates to Down’s syndrome in the context of the Prenatally Diagnosed Condtions Awareness Act and the need to improve information given to parents expecting children with Down’s syndrome.

My initial reaction was that perhaps statistics about abortion rates had no place in information for would-be parents anyway – you can’t guilt-trip someone into choosing to keep a child with disability (or at least you shouldn’t).

However, I then read the document (Pdf) itself and immediately changed my opinion to be supportive of Leticia’s position.

The document is not designed to provide information to would-be parents but to effectively lay out some ground rules for the discussion of prenatal testing. It appears to be an attempt to be as politically neutral as possible on issues related to abortion and disability – which is to be applauded I think. However, the groups appear to have gone so far in attempting to be neutral that they are actually in denial about some issues what most people would hold to be self-evident.

Among the six ‘misconceptions’ are:

  • Misperception 1: Obstetricians recommend prenatal tests to reduce the number of individuals in society who have birth defects and genetic conditions.
  • That may not be the primary reason for doctors recommending prenatal tests, but it is the primary driver behind the existence of prenatal testing programmes. As previously discussed in relation to testing programmes in Europe and Australia. As Dominic Lawson wrote of the UK’s programme: it is “hugely expensive, justifiable on cost-benefit grounds purely on the basis that it will detect and destroy children who would otherwise cost the Health Service much more as survivors”.

  • Misperception 3: Ninety percent of pregnancies prenatally diagnosed with Down syndrome are terminated.
  • The consensus statement argues that “Several studies reporting older data, studies from single centers, and studies from other countries have reflected variation in the number of pregnancies terminated.” Yes, there are geographic variations, but if there is a study that shows any figure substantially lower than 90% I don’t remember seeing it.

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