Stigma in differences of sex development: a scoping review

Differences of sex development (DSD) affect somatic sex determination and differentiation and are associated with stigmatization risks. This scoping review evaluated reports of stigma experiences described by individuals with DSD, caregivers of individuals with DSD, and non-affected individuals (e.g., laypeople).

A multi-step, iterative process was used for the search strategy. Databases utilized included Cochrane Library, PubMed, Ovid MEDLINE (Ovid MEDLINE(R) and Epub Ahead of Print, In-process & Other Non-Indexed Citations, Daily and Versions(R)), Embase (Elsevier), CINAHL Complete (EBSCO), PsychInfo (EBSCO), LGBT Life (EBSCO), and Scopus (Elsevier). Peer-reviewed, English language, quantitative or qualitative studies that evaluated stigma or stigma-related attitudes toward individuals with DSD published from 1955 through August 2024 were included. Stigma was categorized as felt (feared rejection), enacted (bullying), or systemic/structural (e.g., institutionalized policies).

Searches yielded 6,892 articles after eliminating duplicates. Following full-text screening, 206 articles were included in the review indicating that DSD-specific stigma was measured. However, measuring stigma was a specific study aim in a minority of publications (51 articles, 25%), with evidence for felt (164 articles, 80%), enacted (127 articles, 62%), and structural/systemic stigma (70 articles, 34%) reported across informants and DSD diagnosis. Few studies utilized validated DSD-specific stigma measures.

Stigma is commonly reported in the literature across the spectrum of DSD conditions but is rarely measured. Stigma was predominantly assessed using open-ended questions, with limited use of validated measures. Results have implications for clinical care, including stigma-related screening and intervention and the need for future research using standardized stigma assessments.