3-21 Foundation Announces Official Position; Calls on other Down syndrome organizations to do the same.
Online PR News – 22-January-2013 – Cambridge, MA – By unanimous vote at its most recent Board meeting, the directors of The 3-21 Foundation, a Massachusetts-based non-profit foundation, adopted an official position in response to the unprecedented increase in prenatal testing for Down syndrome (Trisomy 21). The 3-21 Foundation’s position is that "Prenatal testing for the intent of finding and aborting a baby with Down syndrome is unacceptable." The 3-21 Foundation also urges other Down syndrome organizations to publicly adopt a similar position.
Recent legislative changes, specifically the Patient Protection and Affordable Care Act (“ObamaCare”), have mandated insurance coverage for pre-natal testing for Down syndrome of all pregnant women. Studies (Farrelly, et al in the Journal of Genetic Counseling (Springer), Feb 2012) have shown that most genetic counselors (77%) describe Down syndrome negatively, characterizing it as “severe”. In addition, these studies have found that most genetic counselors mentioned termination (abortion) as an option after a diagnosis of Down syndrome but few offered other options such as continuing the pregnancy or adoption.
This negativity is the opposite of the actual experience of families where a member has Down syndrome. Large scale studies show that parents of children with Down syndrome have a dramatically “more positive outlook on life” (79% of parents so reported in a study published by Skotko, et al in the American Journal of Medical Genetics (AJMG), Oct. 2011.) Other peer-reviewed studies (Urbano & Hoddap in American Journal On Mental Retardation, July, 2007, etc) have shown that marriages are strengthened by the presence of a child with Down syndrome.
Siblings universally are convinced they are “better people” because of their sibling with Down syndrome (88% of brothers and sisters feel this way re: Skotko, et al in AJMG, Oct. 2011.) In addition, 99% of adults with Down syndrome report feeling “happy about themselves”. These factors all contribute to a desire by many to adopt children with Down syndrome. There are waiting lists of prospective parents across the U.S. seeking to adopt children with Down syndrome, a phenomenon that the Associated Press (AP) reported in Feb. of 2006.
The five parents of children with Down syndrome serving on the 3-21 Foundation Board personally attest to the truth in these positive studies. “People with Down syndrome are valued members of their families and communities, contributing to society in many ways. Likewise, they should be welcomed into it”, said Julie Lim Messina, 3-21 Foundation President. “We encourage prospective parents to access the many excellent resources available and to make a life-affirming choice”.
About the 3-21 Foundation:
The 3-21 Foundation is a 501(c)3 non-profit based in Cambridge, MA focused on education, cognition, and advocacy for the dignity of individuals with Down syndrome (Trisomy 21). Its mission is ensuring that individuals with Down syndrome are valued, included and given the opportunities to pursue fulfilling lives by providing educational, social and support programs to individuals with Down syndrome and their families, educators, health care professionals and the community-at-large. Among other activities, the 3-21 Foundation runs The Learning Program Boston (https://www.facebook.com/LearningProgramBoston) and http://www.Trisomy21.org.
• Pre-natal Testing- http://www.DownSyndromeTest.org
• Domestic Adoption of Children with Down syndrome- National DS Adoption Network: http://www.ndsan.org/
• International Adoption of Children with Down syndrome- Reece’s Rainbow: http://www.ReecesRainbow.org