As data science and AI implementation continue to advance health research, it is imperative to address the ethical, legal, and social issues (ELSI) that arise. DS-I Africa recognises the need for ethical, equitable, responsible, and culturally sensitive use of personal data to build trustworthy data ecosystems. Key ELSI considerations include informed consent and privacy, mitigating bias and ensuring equity, clarifying data ownership and cross-border sharing, building public trust and ensuring benefit sharing, and fostering public engagement and patient involvement in data-driven health research5,6.
To address the ELSI issues in data science and AI for health research, DS-I Africa integrated ELSI projects and research hubs into its framework from the outset to collaborate on identifying and addressing existing and emerging ethical challenges that could arise from the implementation of the research projects. Key initiatives include “DS-I Africa Law” for legal clarity in data governance, “REDSSA” for responsible data governance and public trust, and “PUBGEM-Africa” for addressing governance in data science and genomics, promoting public engagement. These initiatives have contributed to policy development, such as revisions to South Africa’s Material Transfer Agreement, Open Science Policy, and Code of Conduct for Research. For example, the Data Science for Social Determinants (DSSD) training programme emphasises embedding equity in data science education by incorporating frameworks that consider social, environmental, and upstream determinants of health, thereby addressing the root causes of inequities. In parallel, DS-I Africa Law and the BRIDGE ELSI project7 have made foundational contributions to the ethical oversight and legal landscape of data governance in Africa. Notable achievements include the development of legal guides for non-lawyers working with data in health research across 12 African countries8,9. These guides, complemented by an AI-powered chatbot that provides accessible legal guidance on data governance (https://www.datalaw.bot.), offer practical tools for navigating complex data regulations.
A key focus has been ensuring compliance with data protection legislation in data-driven health research, examining regulatory frameworks, institutional policies, and the practical challenges of implementing data governance. Additionally, attention has been given to the governance of data-driven health research, including consent processes, codes of conduct, ethical implications of data collection and sharing, and the role of ethics advisory committees. Overall, the DS-I Africa consortium has adopted a comprehensive approach to ethical and legal frameworks in data-driven health research, generating applied legal tools. Future efforts will focus on harmonising African data protection and AI governance frameworks to realise the full potential of data-driven health research while safeguarding public trust and ethical integrity.