Journal of community genetics · 2026
Confronting stigma in neurogenetic diseases in Tanzania: a clinician - informed narrative.
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Manji Mohamed, Alimohamed Mohamed Zahir, Dekker Marieke C J
Аннотация
BACKGROUND: Genetic diagnoses can reduce diagnostic uncertainty but may also intensify stigma, particularly where neurogenetic disorders carry strong social and spiritual meanings. In Tanzania, access to genetic testing remains limited, and diagnoses are often established through available testing combined with compelling clinical evidence.
METHODS: Grounded in the Health Stigma and Discrimination Framework and informed by clinical and research experience in Tanzania, this clinician-informed narrative examines stigma associated with neurogenetic disorders.
RESULTS: The article identifies drivers, facilitators, intersecting stigmas, manifestations, and outcomes of stigma in neurogenetic conditions. It operationalizes the framework for low-resource settings and highlights how cultural beliefs, limited genetic literacy, health-system gaps, gender norms, disability stigma, and socioeconomic vulnerability can shape families' experiences.
CONCLUSION: Context-sensitive strategies across clinical, institutional, and community levels are needed to mitigate stigma. Applying the framework can support more equitable, dignified, and culturally responsive neurogenetic care in Tanzania.
METHODS: Grounded in the Health Stigma and Discrimination Framework and informed by clinical and research experience in Tanzania, this clinician-informed narrative examines stigma associated with neurogenetic disorders.
RESULTS: The article identifies drivers, facilitators, intersecting stigmas, manifestations, and outcomes of stigma in neurogenetic conditions. It operationalizes the framework for low-resource settings and highlights how cultural beliefs, limited genetic literacy, health-system gaps, gender norms, disability stigma, and socioeconomic vulnerability can shape families' experiences.
CONCLUSION: Context-sensitive strategies across clinical, institutional, and community levels are needed to mitigate stigma. Applying the framework can support more equitable, dignified, and culturally responsive neurogenetic care in Tanzania.