Renate Lindeman, writing in the [Halifax, Nova Scotia] Chronicle Herald, says women who undergo prenatal screening and testing for Down syndrome should first be provided with accurate information about the happy, healthy lives that are increasingly being led by people with an extra chromosome.
In Holland, Lindeman says, a government-sponsored program to provide balanced information about genetic conditions to healthcare providers and the general public has led about 50 percent of pregnant women there to decline prenatal screening. But such an effort in Canada would be unpopular with businesses seeking to capture a share of a multi-billion dollar market. An excerpt:
While medical biotechnology increasingly impacts our lives in legal, economic and moral ways, the Canadian government is doing little, if anything, to inform or engage the public in policy development. The lack of interest and funding to ensure proper counselling and real, balanced information about Down syndrome for women, before they are offered screening, raises some serious ethical questions.
When I look at my daughters, both living with Down’s, I don’t see the genetically flawed retards, with stunted growth, that prenatal screening is trying to eliminate. I see kind-hearted, happy children who are giants in loving and living, who enrich our human genetic diversity, and who teach me, every day, the most important lesson in life: to feel.
If we let profits be our only guidance in developing policies, will we end up with the Canada we want?
Renate Lindeman is co-founder of Nova Scotia Down Syndrome Society and spokesperson for Down Syndrome Belongs. See earlier post about their video, “Be.”