Understanding a Down Syndrome Diagnosis has been available since 2008, and over 40,000 copies have been distributed nationwide during that time.
In 2009, the booklet was selected by the prestigious Joseph P. Kennedy Jr. Foundation First Call committee as the gold standard for prenatal information about Down syndrome.
Subsequently, Understanding a Down Syndrome Diagnosis was evaluated in 2010 by the Down Syndrome Consensus Group, initiated by the University of South Carolina’s Genetic Counseling Program and Center for Disability Resources, to promote shared understanding of health professional and advocacy community perspectives on Down syndrome. That version was prepared with assistance from representatives of the following:
The American Congress of Obstetricians and Gynecologists (ACOG)
The American College of Medical Genetics and Genomics (ACMG)
The National Society of Genetic Counselors (NSGC)
The National Down Syndrome Congress (NDSC)
The National Down Syndrome Society (NDSS)
According to Janice Edwards, Clinical Professor and Director of USC’s Genetic Counseling Program, “This was a significant collaborative process with representatives of five national organizations contributing expert input to finish the booklet with accurate, balanced information and resources for parents with a prenatal diagnosis of Down syndrome.”
Understanding a Down Syndrome Diagnosis has been featured as a resource in the following journals and news articles:
- Levis DM, Harris S, Whitehead N, et al. Women’s knowledge, attitudes, and beliefs about Down syndrome: A qualitative research study. Am J Med Genet Part A 2012;158A:1355–1362.
- Sheets KB, Crissman BG, Feist CD, et al. Practice guidelines for communicating a prenatal or postnatal diagnosis of down syndrome: recommendations of the national society of genetic counselors. J Genet Couns 2011;20:432–441.
- Leach M and Skotko B. Letter to the Editor. Genet in Med 2012;14:348.
- Hippman C, Inglis A, and Austin J. What is a “Balanced” Description? Insight from Parents of Individuals with Down Syndrome. J Genet Counsel 2012;21:35-44.
- Skotko, B.G., Levine, S.P., Goldstein, R. Having a Son or Daughter with Down Syndrome: Perspectives from Mothers and Fathers. Am J of Med Genet Part A 2011;155:2335-2347.
- Skotko, B.G., Levine, S.P., Goldstein, R. Having a Brother or Sister with Down Syndrome: Perspectives from Siblings. Am J of Med Genet Part A: 2011;155:2348-2359.
- Skotko, B.G., Levine, S.P., Goldstein, R. (2011). Self-perceptions from People with Down Syndrome. Am J of Med Genet, Part A: 2011;155:2360-2369.
- Madeo A, Biesecker BB, Brasington C, Erby LH, Peters KF. The relationship of the genetic counseling profession and the disability community: A commentary. Am J Med Genet Part A 2011;155:1777–1785.
- Dent K, Harper C, Kearney, L, et al. Embracing the Unique Role of Genetic Counselors: Response to the Commentary by Madeo et al. Am J Med Genet Part A 2011;155:1791–1793.
- Denver Post: Life with Down Syndrome (December 18, 2011)
- New York Post: The End of Down Syndrome (November 13, 2011)
- USA Today: Blood Test for Down Syndrome (November 14, 2011)
- Parents.com: Down Syndrome Resources
- Washington Post: Understanding a Down Syndrome Diagnosis by Allison Hassett Wohl (July 11, 2011)