Project Leads
The Problem
In Sub-Saharan Africa (SSA), stroke incidence rates are rising, outcomes are worse, and relatively younger people are affected compared with Caucasian populations. As stroke genomic discoveries and stroke biobanking activities grow in SSA, there is a need to identify, document, and develop approaches to address the ethical, legal, and social implications in an emerging African scientific landscape.
Project Strategy
- Identify and examine relevant stroke biobanking and genomics ELSI issues using mixed methods such as focused ethnography and a questionnaire survey.
- Explore knowledge, attitude, perceptions, barriers, and facilitators influencing ELSI in the context of stroke genomic research.
- Develop contextual intervention tools, platforms, and practices to enhance community understanding and participation in genomic and stroke biobanking activities.
- Build capacity and careers related to genomic and biobanking ELSI for effective client/community engagement.
- Enhance regulatory, governance, and implementation competencies in biobanking science in SSA.
Outcomes to Date
- Developed comprehensive and robust study protocols and instruments and translated study tools into relevant local languages.
- Developed a mini dictionary for data collection.
- Developed a newsletter for the Community Advisory Boards across study sites.
- Concluded qualitative data collection processes by conducting 70 key informant interviews and 28 focus group discussions.
- Recruited over 1,400 participants for the quantitative questionnaire survey.
Project Sites
A: Nigeria
University of Ibadan/ College of Medicine, University of Ilorin/University of Ilorin Teaching Hospital, Federal Medical Centre, Bayero University/Aminu Kano Teaching Hospital, Ahmadu Bello University Teaching Hospital
B: Ghana
Kwameh Nkrumah University of Science and Technology, University of Ghana/Korle Bu Teaching Hospital
Non-African Collaborators
USA: Medical University of South Carolina
UK: Newcastle University
Additional Resources
September 29, 2020
African Neurobiobank for Precision Stroke Medicine: ELSI Project: Project Summary Africa had, hitherto, been under-represented in the biobanking revolution. However, with the Human, Heredity and Health in Africa (H3Africa) initiative, biorepository science has been bolstered and biobanking related activities are growing on the continent
September 28, 2020
Sub Saharan Africa (SSA), which bears 24% of the world’s burden of disease, is also home to: the highest human genetic diversity, vast array of environments, and a diversity of cultural practices. Whereas most of this disease burden has till recently been attributed to various infectious diseases like HIV/AIDS, the onset of the new and concurrent non communicable diseases epidemic is creating unique opportunities
September 25, 2020
HI-GENES Africa Project Summary/Abstract Despite a large number of identified genes, only GJB2 and GJB6 have been systematically studied in sub-Saharan Africans, for which prevalence of NSHI-causal variants is close to zero and we estimate known NSHI genes only explain ~4.1% of autosomal recessive (AR) NSHI in African-Americans.
September 24, 2020
IFGeneRA OVERALL Component The Individual Findings in Genetics Research in Africa (IFGeneRA) H3Africa ELSI Collaborative Centre aims to progressively build an evidence base that forms the basis for context- and country specific development of policies relating to the return of individual genetic research results for African genomic research,
September 22, 2020
Hereditary neurological disorders are very disabling diseases that are under-studied in Africa. Our first aim is to clinically characterize these disorders in the Malian population in order to establish a comprehensive clinical description of the diseases in this region. Our second aim is to identify gene mutations related to neurological diseases, and to explore their effects in cell culture models to further our understanding of their function and interactions and our knowledge of
September 22, 2020
Developmental disorders are severe, chronic disabilities that are systematically increasing in prevalence in low-and middle-income countries. Due to the high burden of infectious disease in many African countries, active research into rare disorders such as DD has been neglected. The genetic aetiology of DD is complex and therefore traditional diagnostic tests have a low success yield.
September 21, 2020
The Community Engagement in Biobanking and Genomics (CEBioGen) collaborative centre aims to build a systematic evidence base for effective community engagement for genomics and biobanking in Africa from the recruitment stage to feedback of findings.
September 16, 2020
The completion of the Human Genome Project and the advances in Bioinformatics technology provide great opportunity for better understanding the extensive genetic and microbiota diversity in African populations and a deeper understanding of susceptibility and