People with Down syndrome oppose universal prenatal testing
Some people with Down syndrome say Quebec's health minister should spend time getting to know them before bringing in universal prenatal testing for the chromosomal disorder, which they would consider discriminatory.
Amniocentesis testing for Down syndrome is usually suggested and publicly covered only for pregnant women 35 and older.
Quebec's Health and Welfare Commission, after a recent public consultation, found that most people in Quebec wanted amniocentesis to be available for any woman who wants it, regardless of age.
But Health Minister Yves Bolduc has yet to make a decision about it.
Some of those with Down syndrome, however, say making the test available for all pregnant women would amount to institutionalized discrimination.
"There wouldn't be any more people like me," said Maude Richard on Tuesday, speaking in French.
Statistics in other countries show that 90 per cent of women end their pregnancy after a positive test.
Last year in Quebec, 115 babies were born with Down syndrome.
A teary-eyed Roselyne Chevrette told CBC News she is proud that her mother chose to have her.
She said that telling parents they can screen for Down syndrome sends the wrong message about people like her, and creates even more prejudice.
She challenged Bolduc to meet and talk with people with Down syndrome before making his decision.
Ghislaine Langavant is a deputy health commissioner who helped write recommendations to the minister on the issue of universal testing.
She said Tuesday there is not enough information available for parents to make an informed choice about whether to have the test.
"Sometimes they're not given any information. Sometimes it's just, 'Do you want to know if your child is normal or not?' And so, of course the parents would say, 'Yes, I want to know if my child is normal.'
"Then they'll say you have so much risk to have a child with Down syndrome. But they don't know what it means, and they don't have an opportunity to speak with parents who have children with Down syndrome. So they don't know what that decision entails," Langavant said.