Community-based behavioral change interventions to reduce the burden of inherited genetic disorders in low- and middle-income countries (LMICs): a scoping review.

Abstract

Background: Genetic and congenital disorders related to consanguineous marriage are a major cause of morbidity and mortality in regions where cousin marriages are common. Their burden may be reduced through community education and awareness, but evidence for a consistently effective means of implementing is sparse. Our aim is to review the published literature and to describe behavioral change approaches that have been used to reduce the burden of inherited genetic disorder in highly consanguineous communities.

Methods: A scoping review based on PRISMA guidance, utilizing methodological framework outlined by Arksey and O'Malley was conducted. A systematic search was done across multiple electronic databases for literature published between 2000 and 2024. Studies related to community-level intervention targeting behavior, knowledge and attitudes related to continuity and genetic disease prevention in relevant LMIC settings were included.

Results: We found nine papers fulfilling our priori search criteria, 6 from South and Southeast Asia and one each from the Middle East, West Africa and North Africa. Overall, the methodological quality of the included studies ranged from low to high, with MMAT scores spanning 40% to 100%. All involved short-term education and counselling sessions aimed at young couples, high school-age adolescents and community members. The majority were haemoglobinopathy targeted. Overall, the included studies reported positive effects of educational, counseling, and integrated behavioral interventions on increasing knowledge about genetic screening, testing, and genetic diseases.

Conclusion: Community-based interventions show promise in improving awareness of consanguinity-related genetic risks in LMIC settings, particularly when culturally adapted and embedded within trusted community platforms. However, evidence remains limited regarding their effectiveness in achieving sustained behavioral change.