Global Down Syndrome

letters to the EDITOR Beautiful, compelling, insightful, and informative are a few of the words I would use to describe Down Syndrome World™. As a parent and an affiliate leader, the content of the articles is always very timely and meaningful. Thank you for providing this incredible resource for the Down syndrome community. Traci Brewer Executive Director Down Syndrome Association of Central Kentucky I really enjoy reading the Down Syndrome World™ magazine every time it comes out. My favorite articles are the ones about people with Down syndrome and the amazing things they are accomplishing in their communities. Thank you for showing the world that people like me can be successful and productive members of society: at school, on the ball field, at work, or wherever our dreams take us. I can't wait for the next one to come out! Brad Hennefer Self-advocate and Entrepreneur Cherry Hill, NJ Michelle and daughter Sophia from the EDITOR WELCOME TO DOWN SYNDROME WORLD™, A PUBLICATION OF THE GLOBAL DOWN SYNDROME FOUNDATION MICHELLE SIE WHITTEN Publisher and Editor The Global Down Syndrome Foundation is dedicated to significantly improving the lives of people with Down syndrome through Research, Medical Care, Education, and Advocacy. JOAQUÍN ESPINOSA, PH.D. Executive Director Linda Crnic Institute for Down Syndrome TOM BLUMENTHAL, PH.D. Director Emeritus Linda Crnic Institute for Down Syndrome TO ICELAND WITH LOVE – At the Global Down Syndrome Foundation, we spend a lot of time reporting on and promoting stories about people with Down syndrome doing great things, overcoming adversity, and celebrating basic rights of passage. This edition of Down Syndrome World™ is a perfect example — we highlight the latest medical and research advances, positive sexual relationships, job opportunities from Denver to Rome, and the accomplishments of filmmakers and tennis players. So watching a recent CBS News report about the "eradication" of Down syndrome in Iceland was rather shocking. The report showed that since noninvasive screening tests were introduced in Iceland, nearly 100 percent of pregnant women who receive a positive test for Down syndrome terminate their pregnancies. An outpouring of anger against the perceived eugenics in Iceland and pity for the Down syndrome community ensued, followed by some counter articles adamant that the trend in Iceland is not eradication, but freedom of choice. The definition of eugenics in the Oxford dictionary is "the science of improving a population by controlled breeding to increase the occurrence of desirable heritable characteristics." For me, the provocative news piece begs a series of important questions. In countries like Iceland, where abortion is legal and paid for by the state and where there are so few people with Down syndrome (the country's entire population is only about 330,000), are the medical professionals adequately educated in terms of what Down syndrome is today? Are they adequately trained in how to give an informed, unbiased diagnosis to pregnant women? Clearly every pregnancy, every woman, and every child is unique, but women should always be given all the facts. While there may not be the wholesale practice of eugenics of people with Down syndrome in Iceland, there is a very good chance that the government and many medical professionals are contributing to a eugenics framework. This can be prevented only by investing in education and training for medical professionals and providing accurate updated information about Down syndrome to pregnant women and families. Global, with our wonderful friends at the National Down Syndrome Congress, recently published the second edition of our joint, free pamphlet, "Prenatal Testing & Information About Down Syndrome." The pamphlet is currently being translated into Icelandic, and we are working with organizations in Iceland to ensure the facts about Down syndrome — especially ones that transcend borders — are better promoted. We hope that publications like Down Syndrome World™ are educating society about the potential of people with Down syndrome, and the Icelandic translation of our pamphlet will better arm medical professionals in Iceland to give balanced information to pregnant women. While these news stories can stir emotions and create controversy, they also provide Global and the Down syndrome community an excellent opportunity to educate. In this instance, to Iceland with love. MICHELLE SIE WHITTEN PRESIDENT & CEO, GLOBAL DOWN SYNDROME FOUNDATION PUBLISHER/EDITOR, DOWN SYNDROME WORLD™ CONTRIBUTORS NICOLE TSCHETTER Contributing Writer JULIE SMITH Content Manager MEGAN LINDSTROM Proofreader MARISA CUCUZZELLA Proofreader ELLEN R. MEDNICK Proofreader GLOBALDOWNSYNDROME.ORG 3

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