Wednesday, 5 September 2012

A Question of Ethics

A friend (she has an awesome Gluten-Free blog for those of you interested) of mine linked tonight to an interesting article written by Julie Robotham for Essential Baby. It talks about research seeking a Prenatal test for Autism.  Like me, she has children on the higher end of the Autism Spectrum.

Basically, the gist of it is that researches want to be able to screen for autism as early as possible, in this case - before birth.

They are following families who already have children on the spectrum - particularly boys. Blood tests, ultrasounds, particularly of the baby's brains are being studied (as well as cord blood at birth) to see if they can pick up hormonal or chemical changes that may link to developing autism.

Andrew Whitehouse, who heads the autism and related disorders program at the Telethon Institute of Child Health Research in Perth, said there would probably never be a cast-iron diagnostic test during pregnancy for autism like those available for Down syndrome. Instead, a test would only point to an elevated risk of autism
I would love to have been involved with a study like this, simply for the science of it. Having had a boy already on the spectrum, and knowing we were having another boy, we knew that there was a better than average chance that Samuel may follow Alexander and have autism. We weighed this up before we decided to try to have a second child and it was something we discussed in detail.

The benefit of screening is that it could potentially make the road to diagnosis smoother for parents (rather than the convoluted, stressful path most travel), and thus access to early intervention easier. And earlier. There is no question that the earlier children with autism (as with so many disorders) can gain early intervention, the better the projected outcomes.

So for that alone, I'd have loved to be involved in a study like that.

But of course, it begs the question. How many parents would want to screen their unborn children for things like autism? Like the tests for Down Syndrome and other Trisomy conditions, would parents then face the ethical question of whether to continue a pregnancy? With tests that can only predict elevated risks, is this a road we want to go down?

Food for thought.  What do you think? Would you want to know?


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