Nova Scotia Down Syndrome Society says people aren’t given the whole picture; Health officials disagree

From the Halifax [Nova Scotia] Daily News:

Renate Lindeman (left) and the Nova Scotia Down Syndrome Society have launched a petition drive asking the Canadian government to assure that accurate and balanced information is provided to prospective parents about genetic conditions that are diagnosed either prenatally or after the birth of a child.

The society says government-funded prenatal screening, in the absence of adequate information, has led to a high rate of abortions among pregnancies involving Down syndrome and could easily lead to discrimination against people with genetic conditions.

A spokeswoman said the provincial health department is reviewing the petition, which carries 799 signatures.

In an interview with the Halifax Daily News, a regional health official disagreed with the assertion that women aren’t offered the full picture. David Young, physician and former chief of obstetrics and gynecology at the IWK Health Centre, said counseling is offered to every couple or woman who receives a confirmed diagnosis that there is a baby with a chromosomal abnormality such as Down syndrome.

Young did not address, however, the question about universally offered first-trimester screening that is at the heart of the DS Society’s concern. First-trimester screening does not provide firm diagnostic information, and is used chiefly to refer women for further invasive diagnostic testing — amniocentesis or chorionic villus sampling.

Renate Lindeman, the society’s president, said women need to be told they can decline first-trimester prenatal screening; they need to be told the purpose of the screening, and they should be given accurate information about living with Down syndrome.

“These tests are designed to detect conditions, and not every woman wants to know,” said Lindeman, a mother of two children with Down syndrome.

More information on the petition drive can be accessed here.

Previous columns by Lindeman:

• ‘Don’t count Down babies out in the womb’
• Discovering a world of hope

This entry was posted on Friday, January 25th, 2008 at 4:45 pm and is filed under NOT2BEMISSED, law, politics, prenatal diagnosis, public attitudes, stigma. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.  Email This Post