The Push for Prenatal Testing in Canada and USA
There has been a lot of discussion by families of children with Down syndrome on list-servs in both Canada and the United States about the decision by Obstetrician and Gynaecologist authorities in both countries which recommends that ALL pregnant women undergo non-invasive prenatal testing. According to these authorities, testing will provide families with more information about their pregnancies and the related possible complications. Also, it’s supposed to help reduce the number of invasive procedures, such as amniocentesis or chorionic villi sampling.

The Society of Obstetricians and Gynaecologists of Canada does recognize the need for “appropriate and sensitive health counselling following positive screening for chromosomal anomalies.” However, far too many families are not being given all the available information about Down syndrome—and information that is given is usually not delivered to parents in a sensitive manner. We know of numerous families who have only been told about the worst case scenarios for a child with Down syndrome. We’ve also heard from families who were given the impression that prenatal screening was mandatory. For many others, amniocentesis was highly recommended but, quite often, families feel they really didn’t have a choice in the matter.

The non-invasive prenatal testing currently available does not provide a 100% accurate diagnosis. Invasive testing is far more reliable, yet it does pose some risks. Yet families, who have not received complete information about the variety of tests that are available, nor about their validity or potential risks, are required to make difficult decisions without knowing all their options.

Having a child is a major decision for families. Choosing to have—or not have—a child with potential difficulties is not a decision that can be made lightly, and families must have ALL available information in order to make an informed decision. This information must be given with tact and sensitivity, and the positive aspects and potentials must also be provided, not just the negative ones.

Families should be given the opportunity to speak with parents who have children with Down syndrome. They have the right to know that old stereotypical ideas about Down syndrome are no longer true—that many advances have been made in medical care and education, among other areas, that have improved the quality of life for these individuals and their families.

We, at the Down Syndrome Research Foundation, believe that it is an individual families’ choice as to whether they will or will not participate in prenatal testing, and what they will do based on the testing information. However, in order to make informed decisions, families must have complete knowledge and understanding of the issues, the risks, the potential complications, and the positive aspects of having a child with Down syndrome as well.

Beginning in British Columbia, we are forming a task force to discuss this topic and to recommend solutions. We will be working with families, health professionals, genetic counsellors, researchers, and hopefully hospitals and other professional groups. Our goal is to help ensure adequate and reliable information is made available to families, and to effect change in how this sensitive issue is discussed with prospective parents.

We plan to continue this initiative across the country and are interested in speaking to parent organizations, families, health and other professionals from across Canada. We welcome your thoughts and your support.

Comments through the Down-syn listserv are welcomed. For more information, please email info@dsrf.org

Sincerely,
Dawn A. McKenna
Executive Director
Down Syndrome Research Foundation
1409 Sperling Avenue
Burnaby, BC V5B 4J8