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The importance of information in Down’s syndrome screening

Posted in Diagnostic testing, Screening by Matt at WelcometoIllinois on December 11, 2008

Angela Blakston has written an excellent column in The Age responding to recent calls for Australia to develop a national screening programme for Down’s syndrome (which I mentioned here).

Blakston is the mother to Gabriel, a 16-month old boy with Down’s syndrome, and makes a coherent argument for any increase in testing to be accompanied by information that provides both positive and negative perspectives.

She writes:

“For a choice to be truly informed, it must provide the full picture, the negatives and positives. While no medical professional ever openly questioned or disparaged our decision, any positive information, particularly early on, was generally conspicuously lacking.

This is the common experience of other women I’ve since met who knew they were carrying babies with Down syndrome.

It’s easy to lay blame with the medical profession. That’s not my intention. While I do believe it’s the job of medical professionals working in prenatal diagnostics to be properly informed on advances for people with Down syndrome and other genetic conditions. I also feel that much of the diagnostic and scanning technology (throughout all stages of pregnancy) is in such a nascent state that the medical profession, and society in general, has not properly worked through the ethical and moral dilemmas it throws up.”

She adds:

“I often ponder the irony that while prenatal scanning becomes more sophisticated and endemic, there has never been a better time than the present for a baby with Down syndrome to be born. There are the heart and other operations and medications available to ensure a high quality of life. There is the realisation of the crucial role of early intervention, with various physical and cognitive therapies for children. It is no coincidence that many children with Down syndrome are being integrated into and graduating from mainstream schools and beyond.

This is a large side to the story that is rarely told to expectant parents. My hope would be that any policy developed for uniform scanning would aim to keep abreast of advances in Down syndrome and clearly communicate these changes to expectant parents.”

I couldn’t agree more.

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3 Responses

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  1. rickismom said, on December 11, 2008 at 5:16 pm

    Well-said

  2. Illinois Mom said, on December 13, 2008 at 5:29 am

    Indeed. I’ve noted that irony so many times. We just have to keep getting the message out. My older daughter entered an essay contest for siblings of children with Down syndrome. Her essay was selected, so tonight she was videotaped reading her story called “Kids with Special Needs Are not From Outer Space.” From what I saw tonight from my daughter and the other kids, I’m definitely bringing a box of tissues to that premier. Kids just get it.

  3. welcometoillinois said, on December 13, 2008 at 8:34 am

    Illinois Mom – do you have a blog?


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