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
March 15, 2019
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
March 15, 2019
PROJECT SUMMARY/ABSTRACT The overall goal of this proposed project is to systematically develop culturally appropriate model ethics guidelines for conducting genetics and genomics research (GGR) in Uganda. This goal will be achieved through the following specific aims:1) to assess stakeholder awareness of GGR
April 4, 2018
This project aims to develop and implement a process for involving potential participants in the governance of a biobank at Tygerberg Hospital. The study will be conducted in two parts. Part 1 will develop an educational tool which will be used for discussions on biobanking throughout the H3Africa network. Using this tool
April 4, 2018
The Genomics Inheritance Legal and Social Issues – GILES, is a collaborative project by health professionals, social scientists, and regulatory authorities at the University of Zimbabwe College of Health Sciences (UZCHS), Africa University (AU), Medical Research Council of Zimbabwe (MRCZ) and Stanford University (USA). The main objective of the GILES program, is to understand the current, emerging and persisting ethical,
April 4, 2018
Genomics research in Africa raises a host of ethical issues. An issue that remains understudied is the relation between genomics knowledge and disease stigma. Stigma may be one of the ways in which genomics research could be harmful to individuals and groups of people, but this challenge is not well understood, in Africa or elsewhere.
April 4, 2018
H3Africa provides an unprecedented opportunity to study genetic and genomic technologies into research, diagnosis, intervention, and treatment for sickle cell disease (SCD) in Africa. As such, involving a few African centres already at the forefront of SCD Research in Africa with moderate expertise on psychosocial research (Cameroon), newborn screening (Ghana) or genomics studies (Tanzania)
April 4, 2018
Poor understanding of gene-environment contributors to health conditions can lead the public to misinterpret that genetics alone determines health outcomes. These misunderstandings could diminish public enthusiasm about the benefits of changing behaviors to reduce risky health behaviors and for participating
April 4, 2018
Indigenous linguistic and cultural concepts of heritability and comprehension of genomics research in Africa (INDIGENE) is a study designed to identify how indigenous populations understand and discuss heritable diseases and use these understanding to develop enhanced consent forms. We will then test