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CANADIAN DOWN SYNDROME SOCIETY

For Immediate Release

(October 9, 2003) - The Canadian Down Syndrome Society is disturbed by the focus of an article in today's edition of the New England Journal of Medicine. The article, and a related editorial, looks at the effectiveness of first-trimester screening for Down syndrome.

The CDSS understands that first- and second-trimester screening and pre-natal genetic testing are not inherently bad. Identifying a baby with Down syndrome before birth can be helpful in ensuring that both mother and child receive optimum pre- and post-natal care. It is the manner in which the results are conveyed to prospective parents and the information offered in conjunction with the results which is concerning.

Medical professionals are often steeped in the principle that different equals deficient, and their language reflects that. In the NEJM editorial, the authors indicate that "non-directive counseling enables couples to compare the risk and burden of Down's (sic) syndrome with the risks, accuracy and limitations of amniocentesis." The CDSS asserts that counseling cannot be considered non-directive if words like "risk" and "burden" are used in reference to Down syndrome. Language that is prejudicial to people with genetic, physical or cognitive differences colors the information that is being offered and detracts from the objectivity of the counselor. As medical professionals are looked upon as experts, this prejudicial slant may impact upon the choices made by parents.

The CDSS believes that impact is the reason why more than 90 per cent of parents given the news that their baby will be born with Down syndrome choose to terminate that pregnancy.

"When parents receive counseling after a positive test result, the doctor will usually point out all the risks associated with Down syndrome," says CDSS Chair Willie Seymour, "They'll tell the parents there's a 50 per cent risk the baby will have a cardiac defect, there's a 15 per cent risk for thyroid dysfunction. What they don't say is that most people with Down syndrome live relatively healthy lives. They don't tell parents that if they choose to continue the pregnancy, there's a 100 per cent risk of falling hopelessly in love with that baby."

The Canadian Down Syndrome Society upholds a woman's legal right to choose the course of any pregnancy. However, when that choice is being made after a positive screening or test for Down syndrome, it must be made with objective information that offers insight into the rewards and benefits of parenting a child with Down syndrome and not just statistics about increased medical risk. The CDSS recommends that doctors put prospective parents in touch with families who have a member with Down syndrome.

Mission Statement

To enhance the quality of life for all individuals who have Down syndrome through advocacy, education, and providing information.


Vision Statement

The vision of the Canadian Down Syndrome Society is that people understand and respect the dignity, worth and rights of all people regardless of ability. People with Down syndrome are an important part of their community and are recognized as making a rich contribution to the growth and well being of society.

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Contact Information:

Elizabeth Dolman
Executive Director

CANADIAN DOWN SYNDROME SOCIETY
811 - 14 Street N.W.
Calgary, Alberta T2N 2A4
Phone: (403)270-8500
Toll Free: 1-800-883-5608
Email: edolman@cdss.ca
Website: www.cdss.ca


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