Addressing stigma in differences in sex development: twenty years of community genetics practice by the Sudanese Intersex Working Group (SIWG).

BACKGROUND

Genetic diagnosis in differences in sex development (DSD) intersects profoundly with social, cultural, and institutional stigma, particularly in settings where consanguinity, traditional gender norms, and limited genetic literacy converge.

OBJECTIVE

To examine how the Sudanese Intersex Working Group (SIWG) identifies and mitigates DSD-related stigma across the life course through two decades of community-embedded practice.

METHODS

This Short Communication synthesizes longitudinal clinical, psychosocial, and advocacy experience from the SIWG, a multidisciplinary initiative that has provided care to individuals and families across Sudan and neighboring regions since 2006.

RESULTS

Longitudinal practice reveals that stigma manifests through delayed presentation, inappropriate sex assignment at birth, and culturally driven practices such as female genital mutilation (FGM) in individuals with a 46,XY karyotype who were misassigned female at birth. SIWG's integrated model addresses these challenges through stigma-informed genetic counselling, culturally and religiously informed ethical framing, legal-psychosocial advocacy, community mobilization, and research contributions that advance international DSD knowledge through novel mutation discovery.

CONCLUSION

DSD-related stigma is a modifiable social determinant. Community genetics must operate beyond clinical silos, offering a replicable, stigma-informed framework for equitable care in resource-limited African settings.