no regrets: prenatal testing and down’s syndrome

TIME magazine’s February 27 edition features an article on the increased availability of early term prenatal testing and its potential correlation with the abortion of babies with Down syndrome. Of particular interest in the article is a survey indicating that only four per cent of parents of a child with Down syndrome regretted having them. Likewise, only four per cent of siblings said they would prefer a different brother or sister. Adversely, an overwhelmingly 90 per cent indicated their sibling actually made them a better person. These numbers are in stark contrast to the number of abortions by women who discover their fetus has Down’s. Some studies indicate 90 per cent of these pregnancies are terminated.

The availability of genetic testing seems to have made the choice to abort more and more logical. Why continue something that will complicate your life when you don’t have to? Yet the science raises some ethical questions.

Our Charter of Rights and Freedom states: “Every individual is equal before and under the law and has the right to the equal protection and equal benefit of the law without discrimination and, in particular, without discrimination based on race, national or ethnic origin, colour, religion, sex, age or mental or physical disability.”

Yet when abortions are performed on the basis of one identifying factor – that the future child will have a disability – does this not contradict the principle that children with disabilities have the same rights as everyone else? Further, what does this mean for those parents who have chosen to raise children with disabilities?

Medical and human support has improved significantly for those who live with Down syndrome. Individuals can now live a healthy life, acquire post-secondary education, and find gainful employment in multiple industries. They are welcomed as contributing members of society. Yet genetic testing for Down syndrome is performed for the sole purpose of ultimately eliminating their existence. Bioethicist Adrienne Asch expressed it this way: “Do not disparage the lives of existing and future disabled people by trying to screen for and prevent the birth of babies with their characteristics.”

TIME magazine said that the vast majority of individuals who had a sibling with Down syndrome felt they became a better person because of that relationship. This is largely because admirable character traits like endurance, tenacity, courage, optimism and faith come through difficult times – not when life is easy.

Some families choose to not have genetic testing done for fear of disapproval of what some might consider an irresponsible choice to keep a fetus with a disability. When I approached the third trimester of my pregnancy my ultrasound picked up an abnormality characteristic of Down syndrome. The day I received my amniocentesis, while people busied themselves around me, I was asked, “If the test results come back positive, will you be aborting the fetus?” As I closed my eyes and let the words sink in, I replied we wouldn’t abort, a decision my husband and I had made prior to the test.

Our son’s story did not include Down syndrome, but it has been a difficult one nonetheless. Despite the challenges, we would concur with those who say that their sibling with special needs has, in fact, improved their lives. Against all norms and expectations of comfort and convenience, it is ironic that testing developed to improve the lives of women could be the very thing that keeps them from one of the most enriching opportunities of their lives.

One thought on “no regrets: prenatal testing and down’s syndrome

  1. How about we just agree that given your strong opinion that disabled children are so “enriching” to the lives of women, you should have all disabled children (I wouldn’t want to short-change your enriching life) and other women who feel as you do should have only disabled children as well. Those of us who don’t want this kind of enrichment should have healthy children and forgo that level of enrichment? Okay?

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