Prenatal Screening - The Good, The Bad And The Ugly

Prenatal screening. Letting parents know in advance about any potential problems. Sounds like a good idea, doesn't it?

According to some local advocates, maybe not.

The devil is always in the details and in this case, the details include what information parents are given if a problem is discovered. And even whether such testing is really ethical at all. What, exactly, are we trying to accomplish asks Susan Sherwin, philosophy professor at Dalhousie University.

"These tests are tests not to cure any condition; these tests are aimed at actually avoiding the condition by avoiding the birth of people with the condition in question. Medicine’s solution to Down syndrome is ‘let’s stop the person from being born.’ This is a very unusual public policy.”

The statistics point to over 90 per cent of pregnancies diagnosed with Down syndrome being terminated. The President and co-founder of the Nova Scotia Down's Syndrome Society poses an interesting question ... just what exactly are parents whose pre-natal screening show that their child will have Down's Syndrome, for example, being told? And perhaps more importantly, what aren't they being told?

An excerpt from a Petition currently being circulated in this regard:

Technological advances in fetal screening are presenting parents -and doctors-with enormous ethical, psychological and social dilemmas. Vulnerable, and with limited or biased information as guidance, more than 90% of prospective parents in Canada choose termination if their baby is diagnosed prenatal with Down syndrome. They may never know there is a world of resources, hope and support out there. In spite of tireless efforts from support groups their information pamphlets rarely reach prospective parents at the time they need it most.

In other countries legislation has been passed or is being debated [Update: and apparently has now been passed] which ensures prospective parents are supplied with balanced information about the diagnosed condition and educational programs for health care providers are established. Although Canada has seen a huge increase in prenatal screening and testing, with most provinces, including Nova Scotia, now funding such procedures, we have not seen similar legislation passed in any province.

In November of 2007, a panel discussion, organized by the Nova Scotia Down's Syndrome Society, was held on this issue. Think about it, the difference between being told that your baby will be born with Down's Syndrome, followed by a virtual shopping list of possible mental, physical and behavioural complications and a possible solution, terminating the pregnancy. Or being given your child's diagnosis along with balanced information as to what that actually means and what services are out there for you, your family and your infant.

The Nova Scotia Down Syndrome Society believes that non-directive and balanced information about all options should be at the heart of prenatal screening.

It's interesting to note that the Nova Scotia Down Syndrome Society has experienced a sharp reduction (of about 85%) in registrations of new families during 2007. What is the value of our children's lives, be they diagnosed with Down's Syndrome or some other condition? Is it too much to ask for our medical professionals to ensure that balanced, non-directive information is provided to parents at the time they are given such potentially life-shattering news?

Renate is a good writer; she writes as one who has been there, as a parent of two daughters with Down's Syndrome; from the heart and also speaks from a place of knowledge (as President of the Nova Scotia Down's Syndrome Society). Read some more of what she has to say.

Meanwhile she offers this for us to ponder.

Just to back up the 'Welcome to Canada' poem with hard facts is this article, Jan 2008 published in the Int. Journal of Pediatrics. Prevalence of DS in the Netherlands is 16 in 10,000 births, this is an increase of about 50% since 20 years ago.

Compare that to NS, where in 2007, to my knowledge about 3 babies with DS were born in a total of 8,500 births. Yet officials maintain that counselling to women is non-directive.

You can find the Petition here. I urge you to seriously consider this issue. And then add your name to the voices demanding change. Demanding fairness for all our children, no matter their diagnosis.