Responding to the increased genetic risk associated with customary consanguineous marriage among minority ethnic populations: lessons from local innovations in England

• DOI: 10.1007/s12687-016-0269-1
• Publication Date: 2016-06-16T07:59:03Z
• Authors: Sarah Salway; Parveen Ali; Giles Ratcliffe; Elizabeth Such; Nasaim Khan; Helen Kingston; Oliver Quarrell
• Keywords: 0301 basic medicine; 03 medical and health sciences; Original Article; 10. No inequality; 3. Good health

Populations practising customary consanguineous marriage have a higher incidence of autosomal recessive genetic disorders than those in which reproductive partners are usually unrelated. In the absence any national-level response, English service developments to address additional needs families living with or at risk such been locally led. These interventions remain their infancy here, as elsewhere Europe, and important questions regarding how appropriate, effective sustainable responses can be operationalised practice. This formative review employed four local case studies together wider consultation exercises over 4-year period (2011–2015) document recent this area need, issues arising lessons inform future work. Service components included following: enhancements services provide family-centred, culturally competent approaches counselling testing; community literacy approaches; capacity development among health professionals. Local were, however, very varied detail, scope, level investment longevity. The provisions community-level were generally well received by who accessed them. Coordinated action across all appeared for an service, but healthcare professionals, particularly general practitioners, often difficult engage agenda. An evaluative culture engagement practice had supported sites. However, sustaining was challenging, where new not integrated into core provision commissioning driven expectations short-term reductions infant mortality disability.