7 December 2008

Pre-natal screening in the news

According to a recent article in The Age.com.au, "more Down testing would halve the number of births".
It begins:
"EVERY pregnant woman should be offered screening for Down syndrome regardless of age, and screening should be co-ordinated by a national policy, according to experts."
As the article later points out, pre-natal screening for Down Syndrome in Australia varies from state to state. Two simple and non-invasive tests -ultrasound coupled with a blood sample from the mother - can help lift the detection rate to 90% (ie 90 out of 100 babies with Down syndrome will be diagnosed before birth.) Those are simply the facts and there's nothing controversial there.
The article goes on:
"International research and local obstetricians claim the move would halve the number of babies born with the genetic condition."
And that, apparently, would be a good thing. Not, I hasten to add, according to the writers of the article, who are simply reporting what others have said. But sadly, some in the medical profession still believe that detecting and killing babies with genetic conditions before they are born is somehow a way of 'preventing' those conditions. Some (though not in this article) even argue that it is irresponsible to burden the health system with the cost of looking after such children.
Would increasing the detection rate of children with Down syndrome really reduce the number of births? Yes, if a study from Denmark cited in the article is applicable to other countries. The study found the number of children born with Down syndrome decreased by 50% when mothers in that country were universally screened.
But look at that another way. If universal screening allows up to 90% of babies with the syndrome to be detected, yet the number born with the syndrome is reduced by only 50%, some mothers are obviously still electing not to abort their unborn child despite knowing that it has a high chance of having Down syndrome.
This was borne out by another article which appeared on the BBC on November 24, headed "Society more positive on Down's". Over the last decade in Britain, the number of children being born with Down syndrome has increased as a proportion of all live births, despite the availability of testing. The article reported on a survey conducted by the Down Syndrome Association in Britain amongst 1000 parents who chose to continue with their pregnancy, even though testing showed a high risk of Down syndrome.
Surprisingly, perhaps, only 33% of those who refused an abortion did so for religious reasons. Some simply didn't believe the test result. The majority, however, said either that life for those with Down syndrome had improved and society had a more positive attitude, or that they knew someone with Down syndrome and felt that their quality of life had been an influence on their decision. Most had the support of their families and friends in their decision to keep the baby.
One of the parents interviewed said:
"Things have moved on and babies with Down's syndrome can have a great quality of life.
"At the back of our minds we did keep alive the possibility that she might not have Down's syndrome but we knew that we would be able to cope if she did - there's so much out there for her.
"Schools are integrated and there are even actors with Down's syndrome.
"There's a worker at our local supermarket who has Down's syndrome and we think that it doesn't need to hold you back."
Three cheers for those who have worked hard to integrate those with Down syndrome into normal society.
Prenatal screening, whether for Down syndrome or any other condition, is not in itself a bad thing, provided it doesn't involve any risk to the baby or the mother. It can allow parents to prepare themselves and their environment for the birth of a baby with special needs.
It becomes problematic when it's promoted as a way of 'reducing the risk' of having a child with a genetic condition. It becomes evil when it is seen as a means of ridding society of a cost to the health system or of pursuing eugenic and consumerist goals.
Most parents who choose to abort their 'abnormal' baby do so with great sadness. How many are given the opportunity and means to find out what help is available before they are booked in to have their baby 'terminated'? How many really provide 'informed consent'?

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I'm a writer, medical graduate, wife, mother, and follower of Christ, with an interest in a wide range of topics and ideas. I live in Western Australia.