Patient-Centered Care: Caring for Families Affected by Disorders of Sex Development

  • Anthony J. AsciuttoEmail author
  • Emily Haddad
  • Janet Green
  • David E. Sandberg
Conference paper
Part of the Advances in Experimental Medicine and Biology book series (AEMB, volume 707)


Disorders of sex development (DSD) are “congenital conditions in which development of chromosomal, gonadal, or anatomic sex is atypical” [1]. The conditions subsumed under this superordinate term are individually rare but, in the aggregate, have an estimated incidence of 0.5–1% [2]. Clinical management of DSD (formerly referred to as “intersex”) had stood largely unchallenged from the mid-1950s until the early 1990s. At that time, criticism of various aspects of clinical practice in DSD emerged from several perspectives [3], perhaps most notably from affected adults who expressed dissatisfaction with their treatment [4, 5]. A confluence of advances in the diagnosis of DSD and appraisal of surgical and psychological outcomes has led to a reexamination of assumptions and clinical practice.


Consensus Statement Congenital Adrenal Hyperplasia Turner Syndrome Interdisciplinary Team Affected Person 
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Copyright information

© Springer Science+Business Media, LLC 2011

Authors and Affiliations

  • Anthony J. Asciutto
    • 1
    Email author
  • Emily Haddad
    • 2
  • Janet Green
    • 1
  • David E. Sandberg
    • 2
  1. 1.Accord AllianceBostonUSA
  2. 2.Division of Child and Behavioral Health, Department of Pediatrics & Communicable DiseasesUniversity of MichiganAnn ArborUSA

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