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      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

      research-article
      1 , 2 , 3 , 4 , 4 , 5 , 6 , 7 , 8 , 9 , 10 , 11 , 12 , 13 , 9 , 14 , 6 , 15 , 7 , 1 , 16 , 2 , 7 , 2 , 16 , 1 , 1 , 16 , 8 , 10 , 7 , 9 , 17 , 1 , 18 , 19 , 2 , 3 , 20 , 15
      International journal of qualitative methods
      biobanking, neurobiobanking, stroke, genomics, precision medicine, ethical, legal, social issues, ELSI, Africa

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          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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          Most cited references52

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          Research electronic data capture (REDCap)--a metadata-driven methodology and workflow process for providing translational research informatics support.

          Research electronic data capture (REDCap) is a novel workflow methodology and software solution designed for rapid development and deployment of electronic data capture tools to support clinical and translational research. We present: (1) a brief description of the REDCap metadata-driven software toolset; (2) detail concerning the capture and use of study-related metadata from scientific research teams; (3) measures of impact for REDCap; (4) details concerning a consortium network of domestic and international institutions collaborating on the project; and (5) strengths and limitations of the REDCap system. REDCap is currently supporting 286 translational research projects in a growing collaborative network including 27 active partner institutions.
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            Strategies for ensuring trustworthiness in qualitative research projects

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              A new initiative on precision medicine.

              President Obama has announced a research initiative that aims to accelerate progress toward a new era of precision medicine, with a near-term focus on cancers and a longer-term aim to generate knowledge applicable to the whole range of health and disease.
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                Author and article information

                Journal
                101213922
                41174
                Int J Qual Methods
                Int J Qual Methods
                International journal of qualitative methods
                1609-4069
                13 November 2020
                23 June 2020
                Jan-Dec 2020
                16 July 2021
                : 19
                : 10.1177/1609406920923194
                Affiliations
                [1 ]Neuroscience and Ageing Research Unit, Institute for Advanced Medical Research and Training, College of Medicine, University of Ibadan, Nigeria
                [2 ]Department of Medicine, College of Medicine, University of Ibadan, Nigeria
                [3 ]Centre for Genomic and Precision Medicine, College of Medicine, University of Ibadan, Nigeria
                [4 ]College of Nursing, Medical University of South Carolina, Charleston, SC, USA
                [5 ]KNUST Hospital, Kwame Nkrumah University of Science and Technology, Kumasi, Ghana
                [6 ]Neurology Unit, Department of Medicine, University of Ilorin Teaching Hospital, University of Ilorin, Nigeria
                [7 ]University of Ghana Medical School, College of Health Sciences, Accra, Ghana
                [8 ]Neurology Unit, Department of Medicine, Kwame Nkrumah University of Science and Technology, Kumasi, Ghana
                [9 ]Neurology Unit, Department of Medicine, Aminu Kano Teaching Hospital, Bayero University, Nigeria
                [l0 ]Neurology Unit, Department of Medicine, Ahmadu Bello University Teaching Hospital, Shika, Zaria, Nigeria
                [11 ]Department of Epidemiology and Medical Statistics, College of Medicine, University of Ibadan, Nigeria
                [12 ]Department of Communication and Language Arts, Faculty of Arts, University of Ibadan, Nigeria
                [13 ]Faculty of Law, University of Ibadan, Nigeria
                [l4 ]Murtala Mohammed Specialist Hospital, Kano, Nigeria
                [15 ]Department of Health Promotion and Education, Faculty of Public Health, University of Ibadan, Nigeria
                [16 ]Neurology Unit, Department of Medicine, Federal Medical Centre, Abeokuta, Nigeria
                [17 ]Department of Epidemiology and Community Health, Faculty of Clinical Sciences, University of Ilorin, Nigeria
                [18 ]Neurovascular Research Group, Institute of Neuroscience, Newcastle University, Newcastle upon Tyne, United Kingdom
                [19 ]Department of Sociology, Faculty of the Social Sciences, University of Ibadan, Nigeria
                [20 ]School of Medicine, University of California, San Francisco, CA, USA
                Author notes
                Corresponding Author: Rufus O. Akinyemi, Neuroscience and Ageing Research Unit, Institute for Advanced Medical Research and Training, College of Medicine, University of Ibadan, Ibadan 200212, Nigeria. rufusakinyemi@ 123456yahoo.com ; roakinyemi@ 123456com.ui.edu.ng
                Author information
                http://orcid.org/0000-0001-5286-428X
                http://orcid.org/0000-0002-2078-9649
                http://orcid.org/0000-0002-0675-2110
                http://orcid.org/0000-0002-2708-4764
                http://orcid.org/0000-0003-4104-2728
                http://orcid.org/0000-0001-8941-7715
                Article
                NIHMS1645483
                10.1177/1609406920923194
                8284747
                34276269
                9698ed5d-da32-4117-ae54-20eae2dda2f7

                This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License ( https://creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages ( https://us.sagepub.com/en-us/nam/open-access-at-sage).

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                biobanking,neurobiobanking,stroke,genomics,precision medicine,ethical,legal,social issues,elsi,africa

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