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The language used to explain prenatal test results will be as important as the results themselves if genetic testing is available for all pregnancies, says the head of the Canadian Down Syndrome Society.

Krista Flint, executive director of the CDSS, says the way the results are explained can heavily influence what decision a woman makes if the pregnancy tests positive to Downs syndrome or other conditions.

“There are many terms inherent in the guidelines that citizens with Downs syndrome find offensive, like calling it a birth defect,” Ms. Flint said.

“‘Screening' suggests keeping out something undesirable. Downs syndrome is not a disease or an anomaly. It's an alternate way of existing.

“This is not a pro-choice nor a pro-Life issue. It's an information issue,” she said.

In light of that, even before releasing the guidelines, the Society of Obstetricians and Gynecologists asked the CDSS to write a commentary to accompany its recommendation for open-age access to genetic screening.

Ms. Flint said that request was a valuable chance to explain to doctors just how essential it was to give fair and balanced information without any inherent sway.

“Parents have told me that they heard this child with Down syndrome would ‘ruin their life' or ‘would never be toilet-trained' – that's not information; that's a bias,” Ms. Flint said.

“We are cautiously optimistic about the provision of this information to women and potential families ... [but it must be] fair and balanced information in a value-neutral kind of way.”