Participants in a panel discussion at Saint Mary’s University Thursday said the public is ill-informed about prenatal testing.
By Graham Mason <gr760084@dal.ca>
Posted: Nov. 2, 2007
Former Nova Scotia Liberal leader Danny Graham speaks at the panel of his own experiences raising a child with Down syndrome
Audio: 5.87 MB clip
Get the Flash Player to see this player.
The panel hopes to raise awareness of the ethical issues related to genetic screening. Photo: Graham Mason
A Dalhousie University professor called on the medical community Thursday to engage in a more critical debate over the screening for Down Syndrome.
In her speech to the group of 60 gathered in the room, Susan Sherwin, philosophy professor at Dalhousie University stops short of calling for an end to testing, but believes more Canadians should be involved in the ethical debate.
“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.”
Down syndrome is a naturally occurring chromosomal arrangement that occurs in one in 800 births in Canada. The condition commonly affects learning style, although this can happen to varying degrees, just as in the affect on physical characteristics and overall health.
Most provinces in Canada, including Nova Scotia, now fund prenatal screening and testing. This screening gives a percentage likelihood of genetic abnormalities such as Down syndrome, which can then be confirmed by another test if the percentage is high.
Sherwin said that there is a worry of a return to historical eugenics policies.
A poster from Lindeman's blog: "Campaign for Down Syndrome." Photo: Renate Lindeman
Parents aborted 91 to 93 per cent of pregnancies diagnosed with Down syndrome according to a literature review conducted in 2002.
“These are not purely questions of medical technology,” says Lynette Reid, an assistant professor in bioethics at Dalhousie University. “When the human genome project was getting underway…ethicists raised the question of whether the knowledge we were going to gain from this was actually going to let us to cure diseases, or whether it would enable us to predict diseases.”
She said this information is something that we as a society must struggle to deal with.
Reid argued that doctors and social workers should be more careful in how they present this information to expecting mothers, who may not want to be forced into this choice at all.
“This whole emphasis on informed consent almost makes it impossible for us to understand that someone’s choice might be not to have so much information, and that that’s a valid and important choice,” said Reid. “Some people live in a world of values where they say ‘what’s coming is going to come, I don’t need to know, I’ll deal with it when I get there, if I have the information I’m going to be forced into choices that I don’t want to have to make.”
Ultrasound showing a fetus with Down syndrome and megacystis. Photo: X. Compagnion
Alice Evans, a mother who spoke at the panel of her experience as the mother of a child with Down syndrome, chose not to have the test done during her pregnancy. “We really felt very strongly that we would love our children no matter what. It wouldn’t matter if they were boys or girls; if they had diabetes or brown hair...we were going to love him”
She said that most people overestimate the difficulties that come with raising a child with Down syndrome.
It’s quite easy to describe parents of children with Down syndrome as ‘special parents’ or ‘super parents,’ Evans described her son Alfie, who has Down syndrome, as “embarrassingly easy to parent.”
She said because screening for Down syndrome is always offered, “the assumption is that it must be a dreadfully debilitating condition that causes extreme pain and hardship for all involved.”
Renate Lindeman, event organizer and president of the Nova Scotia Down Syndrome Society said the debate is far from over. “Advances in genetic science are presenting each of us with new ethical, social, legal, and economic dilemmas. This is not science fiction anymore, today it’s reality,”
The society plans to gather the questions and opinions presented at the meeting in a paper that will be used to create starting point for a record of public reactions.