Disorders or Differences of Sex Development? Views of Affected Individuals on DSD Terminology

Elena Bennecke, Birgit Köhler, Robert Röhle, Ute Thyen, Katharina Gehrmann, Peter Lee, Anna Nordenström, Peggy Cohen-Kettenis, Clair Bouvattier, Claudia Wiesemann, on behalf of dsd-LIFE group

Research output: Contribution to journalArticleAcademicpeer-review

Abstract

Over a decade ago, the participants at the International Consensus Conference on Intersex proposed Disorders of Sex Development (DSD) as an umbrella term for “congenital conditions in which the development of chromosomal, gonadal, or anatomical sex is atypical”. The Group recommended the terminology be sensitive to concerns of individuals having these conditions. Yet, controversy rages over the term DSD. This multicentre clinical evaluation study was initiated as part of the European research group dsd-LIFE to evaluate patient-reported outcome. In total, 1,040 individuals with conditions labeled as Disorders of Sex Development were recruited in Poland, Sweden, Germany, France, United Kingdom and the Netherlands. All participants were asked to rate the terms describing their conditions. Overall, a large majority of participants (69%) reported that the term Disorders of Sex Development applied to their condition or that they felt neutral about it. Most participants preferred terms that were specific to their somatic condition. Overall, our data do not support the view that, in general, the term Disorders of Sex Development is insensitive to concerns of affected persons and that it should therefore be abandoned. However, in the clinical encounter, we recommend that clinicians evaluate each patient’s preferences.
Original languageEnglish
JournalJournal of sex research
DOIs
Publication statusE-pub ahead of print - 27 Jan 2020

Cite this

Bennecke, E., Köhler, B., Röhle, R., Thyen, U., Gehrmann, K., Lee, P., ... on behalf of dsd-LIFE group (2020). Disorders or Differences of Sex Development? Views of Affected Individuals on DSD Terminology. Journal of sex research. https://doi.org/10.1080/00224499.2019.1703130