Knowledge, attitudes and practices of West Africans on genetic studies of stroke: Evidence from the SIREN Study

Abstract

Background: It is crucial to assess genomic literacy related to stroke among Africans in preparation for the ethical, legal and societal implications of the genetic revolution which has begun in Africa. Objective: To assess the knowledge, attitudes and practices (KAP) of West Africans about stroke genetic studies. Methods: A comparative cross-sectional study was conducted among stroke patients and stroke-free controls recruited across 15 sites in Ghana and Nigeria. Participants' knowledge of heritability of stroke, willingness to undergo genetic testing and perception of the potential benefits of stroke genetic research were assessed using interviewer-administered questionnaire. Descriptive, frequency distribution and multiple regression analyses were performed. Results: Only 49% of 2029 stroke patients and 57% of 2603 stroke-free individuals knew that stroke was a heritable disorder. Among those who knew, 90% were willing to undergo genetic testing. Knowledge of stroke heritability was associated with having at least post-secondary education (OR 1.51, 1.25-1.81) and a family history of stroke (OR 1.20, 1.03-1.39) while Islamic religion (OR¼0.82, CI: 0.72-0.94), being currently unmarried (OR ¼ 0.81, CI: 0.70-0.92), and alcohol use (OR ¼ 0.78, CI: 0.67-0.91) were associated with lower odds of awareness of stroke as a heritable disorder. Willingness to undergo genetic testing for stroke was associated with having a family history of stroke (OR 1.34, 1.03-1.74) but inversely associated with a medical history of high blood pressure (OR ¼ 0.79, 0.65-0.96). Conclusion: To further improve knowledge of stroke heritability and willingness to embrace genetic testing for stroke, individuals with less formal education, history of high blood pressure and no family history of stroke require targeted interventions.

Stroke in Africa: profile, progress, prospects and priorities

“…Indeed, basic, clinical, translational and health systems research are required to reduce the burden of stroke. In particular, precision medicine-focused trans-omics stroke research approaches are gaining increasing attention while not abandoning the traditional public health-driven approaches 25 , 306 , 307 .…”

“…The SIREN study has also undertaken the first-ever GWAS to unravel the genetic architecture of stroke in Indigenous Africans and the results are eagerly awaited. Stroke neurobanking resources consisting of blood fractions, extracted DNA, neuroimages and databases of clinical information are also being built in Africa and could facilitate data science-driven trans-omics research (including epigenomics, transcriptomics, proteomics and metabolomics) as well as the development of precision medicine products such as Afrocentric risk calculators, polygenic risk scores, biomarkers and drug targets 23 – 25 , 227 , 307 , 308 . The SIREN neurobiobank comprises a group of constantly monitored ultra-low-temperature (–86 °C) freezers located in Ibadan, Nigeria, constantly powered –20 °C chest freezers located in Ibadan and other recruitment sites, barcode scanners and printers, a laboratory information management system, a secure multi-terabyte server, user-friendly software for archiving neuroimages, and solar-powered inverter systems to provide uninterrupted electric power back-up 272 , 309 .…”

The H3Africa Consortium: Publication Outputs of a Pan-African Genomics Collaboration (2013 to 2020)

“…In parallel to collecting phenotype information related to diseases, some of the H3Africa groups, based on questionnaires and interviews, have also collected valuable data on awareness, psychological and behavioural attitudes of individuals, families and communities towards various diseases. This is well described in the reports from the SIREN group that provide key insights into awareness levels and attitudes towards stroke and stroke-associated risk factors Sarfo, Nichols et al, 2017;Jenkins et al, 2018;Akinyemi et al, 2019). For example, independent surveys and interviews of stroke survivors from communities across Nigeria and Ghana show anxiety and stigma to be two major issues encountered by these patients (Jenkins, Arulogun, and Sarfo 2017;Akinyemi et al, 2019).…”

Unraveling the Ethical, Legal, and Social Implications of Neurobiobanking and Stroke Genomic Research in Africa: A Study Protocol of the African Neurobiobank for Precision Stroke Medicine ELSI Project

“…Including diverse perspectives will allow the examination of the influence of previous contact with the SIREN study as well as stroke disease status on the key ELSI outcome measures being explored. Survey sample numbers are estimated based on preliminary data, which showed 48.7% of stroke patients and 57.0% of stroke-free individuals have knowledge of stroke heritability (Akinyemi, Sarfo, et al, 2019). Using these as a premise and with a 3% degree of precision and 95% confidence level, 829 stroke-free controls would be required.…”