Publications
Peer-reviewed publications published by our staff:
Impact of the increased adoption of prenatal cfDNA screening on non-profit patient advocacy organizations in the United States by Stephanie Meredith, Christopher Kaposy, Victoria J. Miller, Megan Allyse, Subhashini Chandrasekharan, and Marsha Michie, on behalf of the Prenatal Testing PAG Coalition* (2016) in Prenatal Diagnosis
Beyond the Genetic Diagnosis: Providing Parents What They Want to Know by Robert A. Saul, Stephanie Hall Meredith (2016) in Pediatrics in Review
Prenatal Testing: Understanding What’s New and How to Get Support and Information by Eidelman, Steven M.; Meredith, Stephanie; Saul, Robert A. (2015) in The Exceptional Parent
Resources
Our resources have been featured in the following academic and news articles:
Academic Articles
- Debate Surrounds State Laws for Down Syndrome Fact Sheets: the AJMG SEQUENCE: Decoding News and Trends for the Medical Genetics Community by Deborah Levenson, 17 February 2016
- Attitudes of Mothers of Children with Down Syndrome Towards Noninvasive Prenatal Testing by Gregory Kellogg, Leah Slattery, Louanne Hudgins, and Kelly Ormond, J Genet Couns. 2014 Oct; 23(5): 805–813.
- 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.
- Edwards, Janice & Ferrante, Richard. Toward Concurrence: Toward Concurrence: Understanding Prenatal Screening and Diagnosis of Down Syndrome from the Health Professional and Advocacy Community Perspectives. 2009.
Popular Media
- HuffPost: 3 Things You Can Do for World Down Syndrome Day by Meriah Nichols (December 6, 2017)
- The Nation: We’re Failing Our Test Run for the Age of CRISPR by David Perry (October 29, 2017)
- SheKnows: Parenting my kid who has Down syndrome isn’t all rainbows and unicorns by Maureen Wallace (June 8, 2016)
- SheKnows: Why I didn’t terminate my pregnancy after a Down syndrome diagnosis by Maureen Wallace (February 20, 2015)
- Parents.com: Down Syndrome Resources by Amy Julia Becker (2012)
- Denver Post: Life with Down Syndrome by Jeremy P. Meyer (December 18, 2011)
- Washington Post: Understanding a Down Syndrome Diagnosis by Allison Hassett Wohl (July 11, 2011)