Journal of Genetic Counseling

, Volume 20, Issue 5, pp 432–441 | Cite as

Practice Guidelines for Communicating a Prenatal or Postnatal Diagnosis of Down Syndrome: Recommendations of the National Society of Genetic Counselors

  • Kathryn B. SheetsEmail author
  • Blythe G. Crissman
  • Cori D. Feist
  • Susan L. Sell
  • Lisa R. Johnson
  • Kelly C. Donahue
  • Diane Masser-Frye
  • Gail S. Brookshire
  • Amanda M. Carre
  • Danielle LaGrave
  • Campbell K. Brasington
Professional Issues


Down syndrome is one of the most common conditions encountered in the genetics clinic. Due to improvements in healthcare, educational opportunities, and community inclusion over the past 30 years, the life expectancy and quality of life for individuals with Down syndrome have significantly improved. As prenatal screening and diagnostic techniques have become more enhanced and widely available, genetic counselors can expect to frequently provide information and support following a new diagnosis of Down syndrome. This guideline was written for genetic counselors and other healthcare providers regarding the communication of a diagnosis of Down syndrome to ensure that families are consistently given up-to-date and balanced information about the condition, delivered in a supportive and respectful manner.


Down syndrome Trisomy 21 Genetic counseling National Society of Genetic Counselors Practice guidelines 


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Copyright information

© National Society of Genetic Counselors, Inc. 2011

Authors and Affiliations

  • Kathryn B. Sheets
    • 1
    Email author
  • Blythe G. Crissman
    • 1
  • Cori D. Feist
    • 2
  • Susan L. Sell
    • 3
  • Lisa R. Johnson
    • 4
  • Kelly C. Donahue
    • 5
  • Diane Masser-Frye
    • 6
  • Gail S. Brookshire
    • 7
  • Amanda M. Carre
    • 8
  • Danielle LaGrave
    • 9
  • Campbell K. Brasington
    • 10
  1. 1.Division of Medical GeneticsDuke University Medical CenterDurhamUSA
  2. 2.Division of Maternal Fetal MedicineOregon Health and Science UniversityPortlandUSA
  3. 3.Department of GeneticsPenn State Hershey Children’s HospitalHersheyUSA
  4. 4.Center for Maternal-Fetal MedicineDaytonUSA
  5. 5.Division of Maternal Fetal MedicineWest Penn Allegheny Health SystemPittsburghUSA
  6. 6.Department of Genetics and DysmorphologyRady Children’s HospitalSan DiegoUSA
  7. 7.Department of Genetics and MetabolismChildren’s Medical CenterDallasUSA
  8. 8.Department of Obstetrics and GynecologyDrexel University College of MedicinePhiladelphiaUSA
  9. 9.Genetics Division, ARUP LaboratoriesSalt Lake CityUSA
  10. 10.Department of Clinical GeneticsCarolinas Medical CenterCharlotteUSA

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