Break-Out Session to Discuss Prenatal Testing at Down Syndrome Affiliates in Action Conference 2009

Affiliates in Action consists of Down syndrome affiliate leaders across the nation dedicated to serving Down syndrome organizations through collaboration, resource sharing, and networking.

Louisville, KY, September 07, 2008 --( The Down Syndrome Affiliates in Action (AIA) ( announce the third annual Down syndrome leadership conference to be held February 25-28, 2009 in Washington, D.C. at the Doubletree Hotel.

This is a unique opportunity for leaders in the Down syndrome community to present a unified voice and message to legislators about issues affecting the Down syndrome community; encourage Congress to view Down syndrome organizations as vested partners on key public policy issues; enhance Down syndrome organizations by learning about best practices being utilized in other groups; and build a network of contacts with other groups.

Of particular interest is a break-out session to address concerns about Down syndrome prenatal testing currently garnering much public attention by the vice-presidential nomination of Alaska Governor Sarah Palin who is the mother of a child with Down syndrome. Discussions will be led by the Informed Decision Making Task Force (IDM TF) which advocates responsible implementation of all prenatal testing for Down syndrome. Recent headlines report the financial investment in Sequenom's development of a blood test for Down syndrome available in the first trimester of pregnancy. The IDM task force plans to discuss how the reporting overlooks the true accuracy of the test, the potential outcomes of the test, and the responsible implementation of prenatal testing.

The Sequenom test offers increased accuracy in detecting Down syndrome and reduces the number of patients exposed to the health risks associated with invasive diagnostic tests. However, the test still remains a screening test with Sequenom indicating that invasive diagnostic procedures are necessary for a conclusive prenatal Down syndrome diagnosis.

The Informed Decision-Making Task Force is concerned that as more expectant parents undergo prenatal testing, current studies find that a large number of doctors admit their training on prenatal testing is "non-existent" (Cleary-Goldman, et al., 2006) and that many physicians counsel their patients with negative and outdated views about Down syndrome, offering little or no information about support services (Skotko 2005). After a Down syndrome diagnosis, studies report a 90% termination rate (Mansfield, et al., 1999). The data suggests that many expectant parents currently react to the diagnosis and make decisions about whether to continue a pregnancy based on inaccurate or outdated information. Consequently, persisting stereotypes combined with prenatal testing threaten a population that has been historically targeted for discrimination and exclusion.

The American College of Obstetricians and Gynecologists (ACOG) recommends that physicians provide the natural history of Down syndrome with a prenatal diagnosis--a natural history that is consistently improving with longer life spans, fuller social inclusion, and more rewarding opportunities for education and work. ACOG also recognizes that expectant parents may find helpful support through the National Down Syndrome Congress, the National Down Syndrome Society, and local Down syndrome affiliates. Since patients expect to use Sequenom prenatal test results to make informed decisions, the IDM TF calls on Sequenom to work with local Down syndrome affiliates around the nation to participate in the dissemination of accurate information about Down syndrome.

Affiliates in Action—Informed Decision Making Task Force
Mark Leach