ArticleInternational journal of qualitative methods
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.
Article in International journal of qualitative methods. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 14 papers.
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Who cites it
14 citing papers in PubMed.
- Charting neuroethics discourse in Africa: A scoping review of ethical issues of neuroscience research in Africa.IBRO neuroscience reports · 2025Article
- The role of community advisory boards in enhancing recruitment and retention in Alzheimer's disease and related dementia research in Africa: Experience from the READD-ADSP study.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2025Article
- Communicating the ethical, legal, and social issues in neurobiobanking and stroke genomic research in Africa: Project intervention tools development and evaluation procedures.Journal of stroke and cerebrovascular diseases : the official journal of National Stroke Association · 2025Article
- Research participants' perception of ethical issues in stroke genomics and neurobiobanking research in Africa.PloS one · 2025Article
- Genome Tunisia Project: paving the way for precision medicine in North Africa.Genome medicine · 2024Article
- The 2022 symposium on dementia and brain aging in low- and middle-income countries: Highlights on research, diagnosis, care, and impact.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2024Review
- Community engagement in genetics and genomics research: a qualitative study of the perspectives of genetics and genomics researchers in Uganda.BMC medical ethics · 2024Article
- Capacity-Building for Stroke Genomic Research Data Collection: The African Neurobiobank Ethical, Legal, and Social Implications Project Experience.Biopreservation and biobanking · 2023Article
- Research-Related Stakeholders' Perspectives on Sociocultural Considerations in Biobanking Practice in South Africa.Biopreservation and biobanking · 2023Article
- An Equity and Justice-Informed Ethical Framework to Guide Incidental Findings in Brain Imaging Research.Clinics and practice · 2023Article
- Legal Implications of Stroke Biobanking and Genomics Research in Sub-Saharan Africa.Journal of law and medicine · 2022Article
- Biological sample donation and informed consent for neurobiobanking: Evidence from a community survey in Ghana and Nigeria.PloS one · 2022Article
- Stroke in Africa: profile, progress, prospects and priorities.Nature reviews. Neurology · 2021Review
- Promoting diversity and inclusion in neuroscience and neuroethics.EBioMedicine · 2021Article
Corrections and comments
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Authors and funding
34 authors.
Funding
Abstract
The ethical, legal, and social implications (ELSI) of emerging neurobiobanks and data resources are unclear in an African scientific landscape with unique cultural, linguistic, and belief systems. The overarching goal of the African Neurobiobank for Precision Stroke Medicine-ELSI Project is to identify, examine, and develop novel approaches to address ELSI issues of biobanking and stroke genomic research in sub-Saharan Africa (SSA). To accomplish the goal we will (1) explore knowledge, attitude, perceptions, barriers, and facilitators influencing ELSI issues related to biobanking and stroke genomic research; (2) use information obtained to craft a community intervention program focused on ELSI issues; and (3) build capacity and careers related to genomics and biobanking for effective client/community engagement while enhancing regulatory, governance, and implementation competences in biobanking science in SSA. A community-based participatory research and mixed-methodological approach, focused on various levels of the social ecological model, will be used to identify and examine relevant ELSI issues. Contextual intervention tools, platforms, and practices will be developed to enhance community understanding and participation in stroke biobanking and genomics research activities while facilitating enduring trust, and equitable and fair utilization of biobanking resources for genetic and trans-omics research. A concurrent capacity building program related to genetic counseling and biobanking will be implemented for early career researchers. The huge potential for neurobiobanking and genomics research in Africa to advance precision medicine applicable to stroke and other neurological disorders requires addressing ELSI challenges while building sustainable research, career, and regulatory capacities in trans-omics and biobanking science.
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Registered trials
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