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

Abstract

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.

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Correspondence to Kathryn B. Sheets.

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© 2011 National Society of Genetic Counselors. All rights reserved. This document may not, in whole or in part, be reproduced, copied or disseminated, entered into or stored in a computer database or retrieval system, or otherwise utilized without the prior written consent of the NSGC.

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Sheets, K.B., Crissman, B.G., Feist, C.D. et al. Practice Guidelines for Communicating a Prenatal or Postnatal Diagnosis of Down Syndrome: Recommendations of the National Society of Genetic Counselors. J Genet Counsel 20, 432–441 (2011). https://doi.org/10.1007/s10897-011-9375-8

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Keywords

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