Welcome
DS-I Africa Law is a member of the Data Science for Health Discovery and Innovation in Africa (DS-I Africa) Initiative, which aims to “leverage data science technologies to transform biomedical and behavioural research and develop solutions that would lead to improved health for individuals and populations.” DS-I Africa Law supports this aim by providing legal clarity for health researchers in Africa.
What is the aim of the DS-I Africa Law group?
The DS-I Africa Law group focuses on the legal dimensions of using data science for health discovery and innovation in Africa. Accordingly, we complement other ELSI projects that focus more on the ethical and social implications.
Without knowledge of the law, scientists risk starting a health research project only to later find the data that they have generated cannot be used as planned; without knowledge of the law, scientists risk wasting resources, legal liability, and even criminal sanctions. Accordingly, scientists need clarity regarding the ‘hard’ law that governs the use of data in health research.
The law can often be multi-layered, complex, and differs between jurisdictions. Therefore, to facilitate health discovery and innovation that uses data science, we seek to provide legal clarity on a variety of critical legal themes, listed below.
We aim to empower scientists who plan projects using data science for health discovery and innovation in Africa (or with African collaborators) to take the required actions to be legally compliant.
We investigate the law of twelve African nations, based on their involvement with international health research projects, and having their published material accessible in English. We focus on five critical legal themes.
Specific Aim 1: Consent
We aim to provide legal clarity on modes of informed consent. When data, such as genomic data and personal health data, are used in health research, clarity is needed regarding the modes of informed consent (such as broad, tiered, or open consent) that are legally required from research participants in relation to data collection, analysis, storage, combination, sharing within a jurisdiction and cross-border sharing.
Specific Aim 2: Community and individual rights
We aim to provide legal clarity on the nature and content of individual and community rights in genomic data. Legal clarity is needed regarding the respective rights of individual research participants and their communities (where appropriate) in genomic data in particular. These rights potentially include, inter alia, benefit-sharing, ownership, and co-ownership in intellectual property rights in discoveries.
Specific Aim 3: Geospatial
We aim to provide legal clarity on the use of persons’ geospatial data for public health surveillance. Web Geographic Information Systems (Web GIS) are increasingly being used in public health surveillance involving infectious diseases, such as COVID-19. The privacy risks brought about by novel geospatial technologies (and the data generated by such technologies) must be analysed and legal clarity provided on how to comply with the law.
Specific Aim 4: Cross-border data sharing
We aim to facilitate the cross-border sharing of data. For cross-border data-sharing, there are often a number of additional legal requirements. We seek to clarify, and, where appropriate, develop legal instruments, such as standard contractual clauses, to facilitate cross-border data-sharing.
Specific Aim 5: Artificial intelligence
We aim to develop an African approach to the legal regulation of Artificial Intelligence (AI). Data science in health research is increasingly used with AI applications that can transform health innovation. This requires robust governance, risk assessment strategies, and mechanisms to protect human rights. As very little regulation exists in Africa, we aim to pioneer an African approach to the legal regulation of AI in health discovery and innovation.
Cross-cutting theme: Africanisation
An important cross-cutting theme is the decolonization and Africanization of extant law related to the use of data in health research. We engage with the extant law of the twelve jurisdictions from the perspective of current trends in African legal philosophy. We aim to make recommendations for legal innovation and inter-jurisdiction harmonization. The impact of these recommendations will be to empower policymakers in Africa to make the relevant law more attuned to the needs and expectations of the people of Africa.
Project administration
The DS-I Africa Law project is supported by a strong team. Simangaliso Zulu is our Project Officer, Bonginhlanhla Mbambo is our Financial Manager, and Suzette Grobler is our Grant Manager.
Acknowledgement
The DS-I Africa Law research group acknowledges the support by the US National Institute of Mental Health and the US National Institutes of Health (award number U01MH127690). The content of this website is solely the responsibility of the researchers who are members of the DS-I Africa Law research group, and does not necessarily represent the official views of the US National Institute of Mental Health or the US National Institutes of Health.
