Parents divided on hypothetical cure for Down syndrome
November 19th, 2009From the Los Angeles Times ‘Booster Shots’ blog:
Parents of children with Down syndrome, responding to a survey by researchers from the University of British Columbia, differed widely about the desirability of a hypothetical cure for the disorder.
Of the 101 parents surveyed, 27 percent said they would not seek to cure their children and another 32 percent said they were unsure. Forty-one percent said they would definitely treat their children.
Researchers said parents expressed concern that a cure would change their child’s personality. Those who had the hardest time caring for their children were most inclined to seek a cure.
Related story: Mouse study points to treatment for Down syndrome — ABC News
This entry was posted
on Thursday, November 19th, 2009 at 2:53 am and is filed under Down syndrome, NOT2BEMISSED, research news.
You can follow any responses to this entry through the RSS 2.0 feed.
You can leave a response, or trackback from your own site.
Email This Post
Our RSS Feed
November 20th, 2009 at 9:50 am
When I was pregnant I accepted that I would have a child with cognitive impairment – and I still do accept that. When she was born we learned shortly therafter that she had congenital hypothyroidism and without immediate treatment she would experience irreversible and severe impact on cognition. Without hesitation we put her on medication.
I know there are a lot of parents who have very concrete opinions, and others who have a sort of background discomfort – on treating cognition because there is a feeling that “acceptance” comes into play when you tinker with cognition. I understand the thoughts – and I would not wish to take away my child’s uniqueness, of which her Down syndrome is a part. But I will weigh the pros and cons of a developed cognition treatment when the time comes. I view it as helping her just as I’ve helped her with the variety of other things Down syndrome has caused – the heart defect, foot pronation, etc. Just as I implement teaching techniques to help her, I will administer a safe pharmacuetical treatment if the pros and cons lean that way.
Plus the science is so darn exciting!! It isn’t just “cognitive impairment” – a blanket staetement. The science is revealing the nooks and crannies – the biological functions on a cellular level that cause learning and memory issues. Exciting stuff!
November 19th, 2009 at 5:01 pm
Hi, I’m a student at Grinnell College taking a class on disability literature, and we’ve had quite a few discussions about the implications of parents wanting to remove disabilities from their children. In particular, we watched a video where deaf parents, when offered the chance to give their daughter a cochlear implant, outright refused. It introduced me to Deaf Culture and made me see a side of disability I never knew existed. That said, in relation to this article, I admire those parents that chose not to cure their children. I think their decision says a lot about those with Down syndrome (and themselves) – that this disability should not necessarily be looked at as a horrible disease, but instead should be embraced and cared for. On the other hand, I understand that there are differing degrees of Down syndrome, and for some parents, it is almost impossible to accommodate all their child’s needs.