Abstract
Background: Sickle cell disease (SCD) is an autosomal recessive disorder where premarital genetic counseling (PGC) and screening can inform reproductive choices. Without this knowledge, sickle cell status is often identified after a child is diagnosed, limiting opportunities for proactive decision-making. Nigeria, despite its high SCD burden, lacks a national PGC framework due to political, financial, and sociocultural barriers.5
Religion plays a vital role in Nigeria, shaping health behaviors .6.7.8 Religious and traditional leaders are highly influential, often supporting families with marital decisions.10Engaging religious leaders is, therefore, essential for the adoption of premarital screening initiatives, which could enhance informed reproductive decision-making and potentially lower SCD incidence.
While religious leaders' endorsement could improve community acceptance and uptake of genetic counseling services, factors influencing their decision to deliver genetic counseling intervention are unknown. Identifying the determinants of implementing PGC through religious leaders is thus essential. The success of any new genetic counseling intervention will hinge on addressing barriers and leveraging enablers of implementation. In this study, we sought to evaluate the determinants of implementing PGC in Kano, Northern Nigeria.
Methods: From August 2023 to April 2025, we conducted five key informant interviews with Islamic religious leaders from diverse sects in Kano, selected via purposive sampling. Semi-structured interviews were conducted in the local language and explored perceptions of PGC. Interviews were recorded and transcripts analysed using NVivo 14. Coding of the interviews was done to uncover themes that explore the key barriers and facilitators to implementation. Results were mapped to the Consolidated Framework for Implementation Research (CFIR). Codes were validated via intercoder agreement (kappa ≥0.8). The Expert Recommendations for Implementing Change (ERIC) was used to identify strategies based on identified determinants.
Results: Facilitators and barriers were identified across the five CFIR domains. In the intervention characteristics domain, facilitators included strong awareness of SCD burden and religious leaders' endorsement of premarital screening. Barriers consisted of beliefs that disease outcomes depend on faith rather than science, concerns over impersonation or falsified test results, and lack of clear guidance on result interpretation. In the outer setting domain, facilitators were families' requests for genotype compatibility information and neighboring states' laws supporting screening, while a barrier was the perception of legal enforcement as religious overreach. In the inner setting domain, existing advocacy platforms (sermons, radio, social media) were seen as potential levers of implementation, whereas leader disagreement on enforcing versus advising screening posed a barrier. In the characteristics of individuals domain, barriers included leaders' limited genotype knowledge and low confidence in interpreting results. Finally, in the process domain, facilitators were active religious champions promoting testing, structured screening systems in some mosques, and calls for health-religious sector partnerships. To address key barriers, several ERIC strategies were identified. Public health education should highlight the alignment between Islamic teachings and science to enhance acceptance. Awareness campaigns, supported by legislation, are needed to combat falsification and impersonation. Engaging religious figures as champions can promote accurate messaging and encourage voluntary, recommended testing. Standardizing laboratory practices through education, accreditation, and regulation will build public trust. A co-designed, user-friendly results template involving laboratories, religious leaders, clinicians, and families impacted by SCD can aid interpretation. Lastly, ongoing training and certification of religious leaders will support informed, community-based decision-making.
Conclusion: Religious institutions in Kano provide a strategic platform for introducing PGC for SCD. However, before introducing such counseling interventions, we recommend culturally tailored ERIC strategies—including faith-aligned education, community champions, standardized practices, and leader training to enhance trust, promote informed decisions, and support effective public health implementation.