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

@article{Bennecke2020DisordersOD,
  title={Disorders or Differences of Sex Development? Views of Affected Individuals on DSD Terminology},
  author={Elena Bennecke and Birgit Maria K{\"o}hler and Robert R{\"o}hle and Ute Thyen and Katharina Gehrmann and Peter Lee and Anna Nordenstr{\"o}m and Peggy T Cohen-Kettenis and Claire Bouvattier and Claudia Wiesemann},
  journal={The Journal of Sex Research},
  year={2020},
  volume={58},
  pages={522 - 531}
}
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… 
View on Taylor & Francis
ncbi.nlm.nih.gov
13 Citations
Background Citations
3

13 Citations

Citation Type

Citation Type

Differences of sex development in the newborn: from clinical scenario to molecular diagnosis.
TLDR
This review aims to assess the current role of molecular diagnosis in DSD management, as an improved knowledge of the genetic aetiology helps the immediate and long-term management of children with DSDs.
Early Genital Surgery in Disorders/Differences of Sex Development: Patients’ Perspectives
TLDR
Outcome data failed to support a general moratorium on early elective genital surgery, and case-by-case decision-making is better suited to grasping the ethical complexity of the issues at stake.
Risk of gonadal neoplasia in patients with disorders/differences of sex development.
Public understanding of intersex: an update on recent findings
TLDR
It is argued that possible stigmatizing reactions from the public may not be a solid basis on which to justify early surgical intervention on intersex characteristics.
Self- and proxy-reported outcomes after surgery in people with disorders/differences of sex development (DSD) in Europe (dsd-LIFE).
Assessing the health-related management of people with differences of sex development
TLDR
The social and legal approach to care for DSD during the last two decades is summarized, the results of recently funded European research projects dealing with health-related issues in DSD are reviewed, and the compilation of quality indicators that will be needed to benchmark health care provision and health care-related outcomes are addressed.
Differences of Sex Development: What Neonatologists Need to Know.
Applying Single-Cell Analysis to Gonadogenesis and DSDs (Disorders/Differences of Sex Development)
TLDR
The emergence of single-cell genomics and transcriptomics now presents a novel avenue for DSD analysis, for both diagnosis and for understanding the molecular genetic etiology, and has the potential to enhance the understanding of the cellular origins and pathogenesis of DSDs, as well as infertility and gonadal diseases such as cancer.
Participant- and clinician-reported long-term outcomes after surgery in individuals with complete androgen insensitivity syndrome.
Congenital adrenal hyperplasia - current insights in pathophysiology, diagnostics and management.
TLDR
Current insights in congenital adrenal hyperplasia are provided with special attention to more detailed understanding of steroidogenic pathways, refinements in neonatal screening, improved diagnostic measurements utilizing chromatography and mass spectrometry coupled with steroid profiling, and improved genotyping methods.
...
...

References

SHOWING 1-10 OF 45 REFERENCES
Parental Perception of Terminology of Disorders of Sex Development in Western Turkey
TLDR
The perception and usage of terminology among the parents of DSD patients in a tertiary center in western Turkey was addressed and the preferred terminology used by parents was strongly associated with the terminology used most commonly in the medical speciality their child most often attended.
Attitudes towards "disorders of sex development" nomenclature among affected individuals.
Evaluation of terminology used to describe disorders of sex development.
Congenital adrenal hyperplasia patient perception of ‘disorders of sex development’ nomenclature
TLDR
The results indicate that the majority of parents and patients with CAH are dissatisfied with the term DSD, and reconsideration of the current nomenclature and ongoing dialogue between the medical community and patients will eventually lead to removal of stigmatization, better management protocols, and improved outcomes.
Was “variations of reproductive development” considered?
  • M. Simmonds
  • Medicine
    Archives of Disease in Childhood
  • 2007
The new intersex terminology scheme, based on disorders of sex development (DSD) and discussed in the consensus statement by Hughes et al ,1 seems to offer the following benefits: 1. It covers a…
Consequences of the Chicago consensus on disorders of sex development (DSD): current practices in Europe
TLDR
There is evidence that the majority of European DSD centres have implemented policies and procedures in accordance with the recommendations issued by the 2006 Consensus Group, and these findings represent a change in practice with the collaborative goal of improved patient care.
What's in a Name?: The Controversy over "Disorders of Sex Development"
TLDR
Tracing the history of the terminology applied to those with atypical sex anatomy reveals how these conditions have been narrowly cast as problems of gender to the neglect of broader health concerns and of the well-being of affected individuals.
The power in a name: diagnostic terminology and diverse experiences
Soon after the disorders of sex development (DSD) terminology was introduced in the 2006 medical consensus statement on the management of intersex traits, intersexuality became an outdated term…
Participation of adults with disorders/differences of sex development (DSD) in the clinical study dsd-LIFE: design, methodology, recruitment, data quality and study population
TLDR
The European dsd-LIFE study recruited and evaluated the largest cross-sectional sample of individuals with different conditions classified under the term DSD, which will provide a sufficient basis for evidence-based recommendations for improvement of clinical care of individuals affected by a DSD condition.
Should CAH in Females Be Classified as DSD?
TLDR
Given the fact that the term DSD includes many conditions with problematic gender identity and conflicts with the gender assigned at birth, it may be appropriate to exclude females with CAH from the DSD classification.
...
...