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

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.

Stroke in Africa: profile, progress, prospects and priorities

“…The neurobiobank contains >3,800 brain images and 160,000 blood samples including serum, plasma, red cell concentrates and extracted DNA. The ethical, legal and societal implications of stroke neurobiobanking and genomics in the complex African sociocultural landscape are also being explored 310 .…”

Ethical, Legal, and Social Implications (ELSI) Research: Methods and Approaches

“…These scholars have pioneered approaches that combine new and conventional methods, including community participation, public deliberation, citizen juries, fieldwork, ethnography and social observation, local and contextual cosmologies and philosophies, and interventions designed to facilitate capacity building for ELSI‐related careers (Akinyemi et al., 2020; Blacksher et al., 2021; Matimba et al., 2019; Reedy et al., 2020; Treadwell et al., 2017). An excellent example of these approaches is the African Neurobiobank for Precision Stroke Medicine ELSI Project, which is a consortium project studying the ELSI of biological data repositories for stroke genomic research in Africa (Akinyemi et al., 2020). The project is utilizing a mixed‐methods approach based on two elements: the first is research partnerships with the community and various stakeholders with the aim of generating “context‐relevant” and “culture‐appropriate” ELSI knowledge and interventions, and the second is a “novel intervention program” that will apply such interventions to enhance community participation in and research capacity building for neurobiobanking and genomic research activities in Africa.…”

Promoting diversity and inclusion in neuroscience and neuroethics

“…Additionally, stroke – which is the second largest cause of death in the world and has more than 80% of its burden accounted for by people in LMICs – is also a neurological illness of priority. In Sub-Saharan Africa (SSA) for instance, stroke incidence rates are increasing, with more younger people being affected as compared to people from European descent and occurrences leading to worse outcomes [3] . With the exception of the African Neurobiobank for Precision Stroke Medicine: ELSI Project (part of the Human Heredity and Health [H3Africa] consortia) [3] , and the Africa Ethics Working Group (part of the Global Initiative in Neuropsychiatric Ethics [NeuroGene]) – ethical implications of neuroscience research on the African continent have hardly been investigated.…”

“…In Sub-Saharan Africa (SSA) for instance, stroke incidence rates are increasing, with more younger people being affected as compared to people from European descent and occurrences leading to worse outcomes [3] . With the exception of the African Neurobiobank for Precision Stroke Medicine: ELSI Project (part of the Human Heredity and Health [H3Africa] consortia) [3] , and the Africa Ethics Working Group (part of the Global Initiative in Neuropsychiatric Ethics [NeuroGene]) – ethical implications of neuroscience research on the African continent have hardly been investigated. Including researchers and research participants from Africa and other LMICs in the conceptualisation and design of international neuroscience and neuroethics research would be one way of fostering opportunities to critically re-consider ethical questions and priorities.…”

“…While investigating ethical implications of these topics is certainly important, the results may not be immediately relevant to people from marginalised communities À particularly those from low-income and middle-income countries (LMICs) in Africa and other continents À given that they are almost exclusively available to select individuals in high income countries (HICs). Ironically, the majority of people with disabilityadjusted life years (DALYs) related to neurological, psychiatric, and substance-use disorders live in LMICs [2], [3]. Furthermore, in LMICs, there are other priorities for neuroscience research, like identifying cost-effective innovative therapies for the highly prevalent neuroinfectious diseases of the central nervous system À such as meningitis and encephalitis [1].…”