African Neurobiobank for Precision Stroke Medicine – (ELSI) Project

Principal Investigators:

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. In Sub – Saharan Africa (SSA), stroke incidence rates are rising, outcomes are worse, and relatively younger people are affected compared to Caucasian populations. Developing trans-omics approaches to predict, prevent, diagnose and treat stroke in the framework of current emphasis on precision/personalized medicine requires a clear understanding of the interplay of environmental and genomic risk factors. However, the ethical, legal, and social implications (ELSI) of the emerging neurobiobank and data resources are unclear in an emerging African scientific landscape with unique cultural, linguistic, and belief systems operating in a global ‘open science’ research community that increasingly supports the principles of trust, openness, storage, sharing and secondary use of biological materials. The overarching goal of the African Neurobiobank for Precision Stroke Medicine – Ethical, Legal, and Social Implications (ELSI) Project is to identify, examine and develop novel approaches to address ELSI issues of stroke biobanking in SSA. We intend to use a community-based participatory mixed methods research (CBPR) approach involving the various levels of the social ecological model to develop novel, context- relevant and culture-appropriate interventions. We will identify and examine relevant stroke biobanking ELSI issues and develop contextual intervention tools, platforms and practices to enhance community understanding and participation in stroke biobanking activities in a way that will facilitate enduring trust, equitable and fair utilization of biobanking resources for genetic and trans-omics research. The huge potential for neuro-biobanking in Africa to advance precision medicine applicable to stroke and other neurological disorders requires that important ELSI challenges be addressed while building sustainable research and regulatory capacity, careers and infrastructure in trans-omics and biobanking science

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