Tuesday, December 14, 2010

"the Good of Society" vs the good of the mother

When a PhD student at the University of Victoria in New Zealand did a study on women's opinions on pre-natal testing, she was surprised by what she found. Pre-natal screening of unborn babies for genetic defects like Down syndrome have become an accepted practice in medicine. But Dr Donovan, a Sociologist found an important distinction; accepted by whom? The medical establishment or the pregnant women themselves? In this she found some surprising disparities.

There is an unrecognised tension between how screening is understood within the medical profession and how it is experienced by pregnant women themselves. The public health sector endorses screening which is seen as a health good and an economically useful approach.
"Medical literature often presents the reduction of Down Syndrome as a desirable public health goal. However, I found this is not necessarily in line with the views of 'ordinary people' on what is good use of health spending.
Here's the crux of the issue;  'public health goals' are being imposed upon women without their knowledge or informed consent. They are not being made aware of the potential miscarriages with amnio, the possibility of mis-diagnosis, or what to do if an anomaly is discovered. This is the case in every nation with a 90% abortion rate for Down syndrome, the mothers are pressured to make a decision as soon as a diagnosis is given, with only negative counseling. They are not given time to think, do research or get to know women who are raising children with Down syndrome. Public health goals are imposed upon women and they are starting to rebel.

Dr Donovan believes more public debate is needed on the wider issue of giving birth to children with disabilities.
"The medical profession might seek to decrease incidence of conditions such as Down Syndrome but we don’t know what the general public thinks.
"There are actually a range of views out there including women who believe families should have the right to give birth to a disabled child and not be discriminated against for their choice."

Read more here. 
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