The impact of culture on disclosure in differences of sex development

Semin Pediatr Surg. 2019 Oct;28(5):150840. doi: 10.1016/j.sempedsurg.2019.150840. Epub 2019 Sep 13.


Differences of sex development (DSD) include a variety of complex congenital genitourinary abnormalities-whether sporadic or hereditary. The 2006 DSD Consensus Statement and 2016 Update Consensus Statement encourage better communication among providers, between providers and parents, as well as among providers, parents, and patients when developmentally appropriate.1,2 However, a lack of clear communication about the diagnosis and its sequelae may occur at three levels: (1) disclosure from DSD patients' families to their physician, (2) disclosure from patients to their families/communities, and (3) disclosure from the physician to the DSD patient. Additionally, there is a paucity of research available on how culture can impact disclosure among individuals with DSDs. This article discusses disclosure among the various stakeholders and briefly explores the impact of cultural expectations and beliefs with regards to disclosure.

Keywords: Culture; Differences of sex development; Disclosure; Disorder of sex development; Reproductive differences.

MeSH terms

  • Child
  • Communication
  • Culture*
  • Disclosure*
  • Disorders of Sex Development / diagnosis*
  • Disorders of Sex Development / psychology*
  • Humans
  • Parent-Child Relations
  • Parents*
  • Professional-Family Relations
  • Social Stigma