In the past 18 months, the sensitivity and selectivity of non-invasive prenatal screening (NIPS) tests for Down syn-drome and other trisomy conditions has been reported as nearly 99%, and no less than four new tests have been introduced since October 2011 (Palomaki et al., 2012). Likewise, the number of pregnant women using these tests has also risen dramatically.

providing resources about down syndrome to an increasingly diverse audience of expectant parents to improve long-term health disparities

Levis et al. study published in 2012 showed many Hispanic and African American women who are pregnant or planning to become pregnant “said they only saw or knew of Caucasian persons with Down syndrome and requested culturally diverse educational materials about [the condition].”

Hispanic population actually has the highest prevalence of Down syndrome at birth (Shin et al., 2009) while at the same time the lowest life expectancy of all demographics affected by Down syndrome (Fried-man 2001). Experts often attribute this disparity to inadequate access to healthcare and support services.

By establishing a solid conduit for information-sharing among di-verse cultures, the evidence-based programs at the National Center for Prenatal and Postnatal Down Syndrome Resources have the potential to impact overall health and social outcomes for a lifetime.

Most participants in the Levis study recommended including photographs of persons with Down syndrome of all ages and from different racial-ethnic backgrounds in educational materials. Other participants from culturally diverse backgrounds recommended

family stories, internet accessibil-ity, medical practitioner support, video, pamphlets and brochures, social media interaction, and Hispanic participant specifically suggested fotonovelas (illustrated pamphlets) about Down syndrome.

The National Center for Prenatal and Postnatal Down Syndrome Resources at the Human Develop-ment Institute offers three different evidence-based and medically reviewed programs to address the growing needs of diverse audi-ences learning about a prenatal diagnosis of Down syndrome: Lettercase, Brighter Tomorrows, and Down Syndrome Pregnancy.

Lettercase’s Understanding a Down Syndrome Diagnosis book and Under-standing Prenatal Screening and Testing for Chromosome Conditions pamphlet are available in English and Spanish, includes photos reflecting cultural diversity, and is available in print and as a digital book. In April 2013, HDI compiled an original photo library of individuals with Down syndrome with a greater back-ground of ethnic and cultural diversity. Used by 122 countries worldwide.

Brighter Tomorrows offers online information for medical practitioners and for new and expectant parents in both English and Spanish. The Brighter Tomor-rows family website further offers videos and family stories from individuals reflecting different cultural backgrounds and ages.

The Down Syndrome Pregnancy website offers both an online and print version of the book, Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome. In addi-tion, the website provides Spanish online resources for expectant parents, diverse photography, and support is offered via social media. About 140,000 visitors from 174 countries worldwide.

downsyndromediagnosis.org

Harold Kleinert, Ed.D., Executive DirectorMark W. Leach, M.A., J.D., Bioethics SpecialistStephanie Meredith, M.A., Medical Outreach Director

University of Kentucky’s Human Development Institute

NATIONAL CENTER FOR PRENATAL AND POSTNATAL DOWN SYNDROME RESOURCES

1. Palomaki GE, Kloza MS, Lambert-Messerlian GM, et al. (2011). DNA sequencing of maternal plasma to detect Down syndrome: an international clinical validation study. Genet Med, 13(11):913-920.

2. Levis DM, Harris S, Whitehead N, Moultrie, R, Duwe, K, & Rasmussen, S. (2012). Women’s knowledge, attitudes, and beliefs about Down syndrome: A qualitative research study. American Journal of Medical Genetics, Part A;158A:1355–1362.

3. Shin M, Basser LM, Kucik JE, et al. (2009). Prevalence of Down Syndrome Among Children and Adolescents in 10 Regions of the United States. Pediatrics, 124;1565-1571.

4. Friedman, JM. (2001). Racial disparities in median age at death of persons with Down syndrome --- United States, 1968—1997. MMWR Weekly, 50(22);463-5.