Data protection legislation is increasingly being enacted in African countries. Additionally, the African Union recently adopted the AU Data Protection Framework. How are these legal and policy developments influencing established ethics notions about data governance in health research? For example, is broad or tiered consent to research participation sufficient, or does new legislation require specific consent? How do individual rights in data interact with communitarian values? Should health research receive special treatment from a data protection regulatory perspective? How should African countries approach AI in healthcare?
This research topic aims to identify and analyse ELSI challenges in contemporary data governance in African health research, and to develop possible solutions for such challenges. Articles in this research topic will aim to assist policy-makers, health researchers and ELSI practitioners in Africa to better navigate and—where relevant, improve—data governance in African health research.
Perspective-style articles, as well as more in-depth research articles are welcome. While articles can analyse fundamental theoretical issues, application-oriented articles and articles that explore lessons learnt in practice are especially encouraged. Authors should address one or more of following (inter-related) themes within the research topic of data governance in African health research:
1) Conflicts between new legal and policy developments and established ethics notions.
2) Africanisation, decolonisation, and intra-African rule-harmonisation.
3) The evolution of informed consent and the role of trust.
4) The various legal, ethical and social dimensions or meanings of data, and how these dimensions interact.
5) Power and control. This includes individual, institutional, ethnic, community, and national claims to data. It also includes existing and proposed structures of control of data, such as data trusts, and data transfer agreements (DTAs).
6) Engagement with data protection regulatory authorities.
7) Artificial intelligence and Big Data.
Data protection legislation is increasingly being enacted in African countries. Additionally, the African Union recently adopted the AU Data Protection Framework. How are these legal and policy developments influencing established ethics notions about data governance in health research? For example, is broad or tiered consent to research participation sufficient, or does new legislation require specific consent? How do individual rights in data interact with communitarian values? Should health research receive special treatment from a data protection regulatory perspective? How should African countries approach AI in healthcare?
This research topic aims to identify and analyse ELSI challenges in contemporary data governance in African health research, and to develop possible solutions for such challenges. Articles in this research topic will aim to assist policy-makers, health researchers and ELSI practitioners in Africa to better navigate and—where relevant, improve—data governance in African health research.
Perspective-style articles, as well as more in-depth research articles are welcome. While articles can analyse fundamental theoretical issues, application-oriented articles and articles that explore lessons learnt in practice are especially encouraged. Authors should address one or more of following (inter-related) themes within the research topic of data governance in African health research:
1) Conflicts between new legal and policy developments and established ethics notions.
2) Africanisation, decolonisation, and intra-African rule-harmonisation.
3) The evolution of informed consent and the role of trust.
4) The various legal, ethical and social dimensions or meanings of data, and how these dimensions interact.
5) Power and control. This includes individual, institutional, ethnic, community, and national claims to data. It also includes existing and proposed structures of control of data, such as data trusts, and data transfer agreements (DTAs).
6) Engagement with data protection regulatory authorities.
7) Artificial intelligence and Big Data.