Canadian Down Syndrome Society Conference 2012 – Part 1

June 9, 2012

In the middle of all the illness our family has experienced this past month, the Canadian Down Syndrome Society Conference was held in Toronto.  I had never been to a Down Syndrome conference before, so I was keen to see what it was all about.

Unfortunately because Rachel was ill, I missed seeing Marlee Matlin, the keynote speaker, but I understand she and her interpreter gave an amazing talk.  Ah well….

The first talk I went to see was What’s Next Politically, Practically, and Socially by bioethicist and former CDSS Board Member Dr. Tom Koch.  The talk centred around the new prenatal screening test, MaterniT21, which can determine whether a fetus has Down syndrome.  Unlike amniocentesis or chorionic villus sampling, it is noninvasive and can be performed as early as 10 weeks into the pregnancy with no risk to the mother or the fetus. 

Naturally, this leads to some ethical issues.  Already the termination rate of those facing a prenatal diagnosis of Down syndrome is very high—statistics indicate it is somewhere between 85 and 95%.  How will this affect the future of Down syndrome?

Dr. Koch also discussed the attitude of the Canadian Down Syndrome Society, which is that Down syndrome is a naturally occurring genetic variant rather than a harmful medical condition.  If this is the case, what does this mean if individuals are selectively terminating fetuses who carry the extra chromosome?  He likened it to the feticide that is being seen among some cultures where screening for female fetuses is common.  Is terminating for Down syndrome any different?

He wrapped up his talk by indicating that Down syndrome is “the canary in the mine”. Down syndrome has always been a very easy condition to test for, but realistically it’s pretty obvious that many other conditions will be identified prenatally in the future.   He felt that Down Syndrome organizations can take a lead in how they educate others about Down syndrome and the value of people with differences in our society.  We are faced with the irony that even though the quality of life for individuals with Down syndrome has never been better, the likelihood of someone being born with Down syndrome is decreasing. Are we experiencing a new eugenics movement?

Naturally in a room full of individuals with Down syndrome and their families, this talk led to some heated discussion.  I find as a parent of a child with Down syndrome, you become not just an advocate for your child but for those with Down syndrome everywhere.  It has left me wondering what my role as an individual should be.  How do we combat negative attitudes towards people with Down syndrome–those who are here and living in society– when prenatally the picture is painted so bleakly for families?  

There was lots of food for thought in Dr. Koch’s session – with no easy answers, but the challenge of stepping up as leaders in this area appeals to me. To what extent will we allow society to determine the value of our children or even ourselves?  The answer remains to be seen….

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{ 1 comment… read it below or add one }

Ellie June 21, 2012 at 5:29 pm

The eugenics question is very apt and not thoughtfully considered enough by the general public.
Raising awareness about it is an important strategy.

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