August 16, 2017, Atlanta, GA – The National Down Syndrome Congress (NDSC) reacts to “CBSN On Assignment’s” report about Iceland’s nearly 100 percent termination rate of fetuses with Down syndrome. “There is no way to predict the future for any child, whether they have Down syndrome or not,” according to NDSC Executive Director, David Tolleson. “To eliminate an entire class of people is always wrong. Throughout history, there have been those who wish to eradicate people who are different, due to race, religion, gender, socio-economic status, disability, or other issues. Eugenics is not the answer. Whether the cause is ignorance or hatred, whether it’s pushed by politicians, scientists, or just accepted by everyday citizens, it’s still wrong.”
Regarding his country’s near total termination of fetuses with Down syndrome, Icelandic geneticist Kari Steffanson notes, “It reflects a relatively heavy-handed genetic counseling. And, I don’t think that heavy-handed genetic counseling is desirable … you’re having impact on decisions that are not medical, in a way.” Supporting the notion that Icelanders are receiving inaccurate information about Down syndrome, Helga Sol Olafsdottir, a counselor at Landspitali University Hospital — where most of the country’s children are born — says the following regarding the abortion of fetuses with Down syndrome, “We ended a possible life that may have had a huge complication … preventing suffering for the child and the family.”
However, studies in the United States, as well as personal accounts from many nations, show that despite potential challenges, most families that have a child with Down syndrome are stable, successful and happy. Similarly, studies focusing on personal satisfaction for people with Down syndrome indicate that most older children, teens, and adults surveyed feel they lead happy and fulfilling lives(1). An increasing number of people with Down syndrome are participating in post-secondary education and college programs, finding employment, living independently or semi-independently, and enjoying a variety of relationships including, in some cases, marriage.
To help ensure the people of Iceland receive accurate, up-to-date information about Down syndrome, the NDSC today announces two new initiatives. First, the organization will expedite translation of its Prenatal Testing Pamphlet (currently available in English and Spanish), into Icelandic. This free resource for parents and medical professionals was produced in partnership with Global Down Syndrome Foundation. Second, NDSC has established a scholarship program to encourage Icelanders who have Down syndrome, are family members of individuals with Down syndrome, or, who are healthcare providers, to attend NDSC’s annual convention, which will be held next year in Dallas, TX. With approximately 4,000 participants, the NDSC Convention is the world’s largest gathering of individuals with Down syndrome, their family members, and the professionals who work with them. It is held in conjunction with the Down Syndrome Medical Interest Group, USA’s annual symposium, as well as Global Down Syndrome Foundation’s Research and Medical Care Roundtable.
Tolleson noted, “Education is the antidote to ignorance. We believe that there is beauty in our diversity and it makes us stronger. Hopefully, we can convince others of that, too.”
(1) Skotko, B.G., Levine, S.P., & Goldstein, R. (2011). Self-perception from people with Down syndrome. American Journal of Medical Genetics. Part A, 0(10), 2360-2369. http://doi.org/10.1002/ajmg.a.34235
About the National Down Syndrome Congress
Founded in 1973, the National Down Syndrome Congress is the country’s oldest organization for people with Down syndrome, their families, and the professionals who work with them. A 501(c)(3) non-profit advocacy organization, the NDSC provides support and information about issues related to Down syndrome throughout the lifespan, as well as on matters of public policy relating to disability rights. The National Down Syndrome Congress is committed to creating a national climate in which all people will recognize and embrace the value and dignity of people with Down syndrome. For more information about the NDSC, please visit our website at www.ndsccenter.org.