Document text
Principal Investigator: Keymanthri Moodley
Organization: STELLENBOSCH UNIVERSITY
Fiscal Year: 2024
Award: $376,418
Funding agency: National Institute of Mental Health
PROJECT SUMMARY
The Research for Ethical Data Science in Southern Africa (REDSSA) project has the overall aims of producing
new knowledge in regard to the ethical, legal and social implications (ELSI) of conducting data science research,
to develop evidence-based, context specific guidance for the conduct and governance of data science initiatives
such as DS-I Africa, and to strengthen the culture of responsible data science in Southern Africa. The project
will be conducted in three phases.
Phase 1 is research intensive and will obtain empirical data on key stakeholder views regarding the development
of data science guidance to inform governance of DSI-Africa Research Hubs in Southern Africa. This phase will
start with conceptual research and normative analysis of the ELSI issues related to data science. Important
concepts to explore will include data sovereignty where data protection is balanced with responsible data
sharing. Given that digital data is often experienced as intangible and abstract by the lay public, the project will
employ crowdsourcing as a form of citizen science to inform the development of innovative educational tools that
could be adapted for stakeholder engagement in data science in the DS-I Africa network. Using these tools, we
will conduct in-depth interviews with key stakeholders to ascertain their experiences with ELSI-data science
related challenges, gaps in current guidance and their views on procedural and substantive aspects of guidance
development in data science governance. Key themes that emerge from the empirical research will underpin our
approach to co-creation of guidelines, procedures and policies required in the DS-I Africa consortium. During
phase 1, ethics consultants embedded in the Research Hubs will address emerging ELSI concerns.
In Phase 2 of this project, we will develop guidance documents informed by phase 1 research and by best
practices in international data science research guidance, the limited experience and existing literature to date
concerning data science research and governance of data management in Southern Africa. Importantly, such
guidance will be informed by the values of solidarity, sharing and mutual benefit - important concepts in Southern
African moral frameworks based on communal good. This approach is congruent with health data ecosystems
that require different stakeholders to work collaboratively for health innovation. The results of these policy-related
activities will be tempered with key concerns and principles identified in our conceptual and empirical work and
will provide locally grounded, practical guidance on the ELSI of data science research conducted in the hubs.
In Phase 3 of the project, we aim to amplify the impact and enhance the sustainability of our research and
governance activities by creating ELSI networks and communication channels focusing on data science in
Southern Africa. This will involve establishing an ELSI Data Science Southern African Network (EDSSAN) to
respond to evolving ELSI concerns in DS-I Africa Research Hubs beyond the funding period, hosting annual
conferences, and leveraging existing local networks.
Terms: <3-D Imaging><3D imaging><AI system><Advisory Committees><Africa><Africa South of the Sahara><African><Artificial Intelligence><Behavioral Research><Big Data><BigData><Bioethicist><Bioethics><Bioethics Consultants><Biomedical Ethics><Biomedical Research><Collaborations><Communication><Communities><Competence><Computer Reasoning><Computing Methodologies><Consensus><Consultations><Country><Creativeness><Data><Data Collection><Data Protection><Data Science><Data Set><Development><Devices><Disease><Disorder><ELSI><Economic Income><Economical Income><Education><Educational aspects><Empirical Research><Ensure><Ethical Analyses><Ethical Analysis><Ethicists><Ethics><Ethics Consultants><Ethics Consultation><Face><Funding><Guidelines><Health><Health Inequity><Health Promotion><Health Sciences><Health system><Healthcare><Healthcare Delivery><High Prevalence><History><Income><Individual><Inequalities in Health><Inequities in Health><Institution><International><Intervention><Intervention Strategies><Interview><Justice><Knowledge><Laws><Life><Literature><Machine Intelligence><Machine Learning><Methodology><Mission><Modeling><Morals><Penetration><Phase><Policies><Population><Procedures><Public Health><R-Series Research Projects><R01 Mechanism><R01 Program><Recording of previous events><Records><Research><Research Ethics><Research Grants><Research Project Grants><Research Project Summaries><Research Projects><Salutogenesis><Sampling><Services><Social Sciences><South Africa><Southern Africa><Structure><Sub-Saharan Africa><Subsaharan Africa><Task Forces><Technology><Three-Dimensional Imaging><Transfer Agreement><Trust><Work><advisory team><amateur science><amateur scientists><citizen science><citizen scientists><civic science><cloud storage><cloud-based storage><commune><community engagement><complex data><computational methodology><computational methods><computer based method><computer methods><computerized data processing><computing method><conference><consultation><convention><creativity><crowd science><crowd source><crowd-sourced science><crowd-sourcing><crowdsource><crowdsourcing><data access><data ecosystem><data exchange><data framework><data literacy><data management><data processing><data sharing><data sharing ecosystem><data transfer><data transmission><deep learning><deep learning method><deep learning strategy><developmental><digital><digital data><digital phenotyping><empowerment><engagement with communities><ethical><ethical legal and social><ethical, legal, and social implication><evidence base><experience><faces><facial><health and care delivery><health care><health care delivery><health data><health delivery systems><health inequalities><health science research><health services delivery><histories><improved><incomes><innovate><innovation><innovative><insight><interventional strategy><machine based learning><moral><open data><open science><open-source data><population health><promoting health><public health ethics><public health intervention><public health research><public trust><responsible research conduct><scientific citizenship><solidarity><summit><symposia><symposium><tool>