Decolonisation and Self-Regulation as Alternative Paths to Data Science Health Research Governance in Africa

Data science health research (DSHR) presents new ethical challenges to the traditional model of human subject research, particularly by enabling data processing without the consent of data subjects. Although the current research governance framework makes informed consent a cornerstone of ethical research practices, obtaining individual consent can often be impractical in DSHR. This paper explores the alignment of DSHR with African customary governance and communal lifestyles as a framework for ethical research oversight.

This paper adopts a case study methodology, using a comparative analysis of decolonisation and self-regulation in health research across five African countries-Nigeria, Kenya, Ghana, Uganda, and South Africa. The study combines doctrinal analysis of legal and policy frameworks with reviews of peer-reviewed literature, case law, and diverse online resources such as PubMed, Google Scholar, HeinOnline, and government websites.

Data science health research challenges traditional biomedical ethics by enabling data processing without consent, thereby questioning the longstanding principle that informed consent is a prerequisite for ethical research. However, this principle has been widely contested as a universal standard, particularly in African contexts where decision-making is often communal rather than individualistic. The case studies illustrate that while informed consent remains a normative requirement, largely to satisfy the expectations of funding bodies, communal approval is paramount. Furthermore, religious and cultural traditions often accommodate forms of paternalistic consent, reinforcing collective decision-making structures.

Given that African societies emphasise communal governance, the ethical challenges posed by DSHR, particularly regarding consent, may be less pronounced in Africa. However, decolonisation and self-regulation are not merely theoretical constructs, but a practical and necessary process that requires deliberate action. Unless African leaders take decisive steps to restructure governance, prioritise self-reliance, and invest in homegrown research and development, the discourse on decolonising DSHR in Africa will remain purely theoretical, lacking the practical implementation needed for real change.