I wanted to share something that I received on a listserv that I am on regarding the push for prenatal testing.

Sharla

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THE PUSH FOR PRENATAL TESTING IN CANADA & 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 that 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.=20

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.=20

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
www.dsrf.org