Sunday, November 24, 2024
11/24/2024
Project Summary/Abstract The proposed project will have a strong focus on the legal dimensions of using data science for health discovery and innovation in Africa. Accordingly, the proposed project is intended to complement other ELSI projects that may 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 may differ between jurisdictions. Therefore, to facilitate health discovery and innovation that uses data science, legal clarity will be provided on a variety of critical legal themes, listed below. The expected output of the proposed project will be practical guides for scientists on how to be legally compliant with regard to each of these themes. The impact will be that scientists who plan projects using data science for health discovery and innovation in Africa (or with African collaborators) will be empowered to take the required actions to be legally compliant. The proposed project will have a broad jurisdictional scope, involving the law of twelve African nations. Five critical legal themes will be investigated over a three-year period: (1) modes of informed consent to the use of data; (2) the nature and content of individual and community rights in genomic data; (3) the use of persons' geospatial data for public health surveillance; (4) the cross-border sharing of data; and (5) the use of data as basis for Artificial Intelligence (AI). An important cross-cutting theme and goal of the proposed project is the decolonization and Africanization of extant law related to the use of data in health research. The proposed project will critically engage with the extant law of the twelve jurisdictions from the perspective of current trends in African legal philosophy. The expected outcomes are 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. The project team consist of leading law academics from different regions in Africa – boasting with a collective publication record of 148 articles in peer-reviewed journals. The team's core expertise is the legal regulation of data, and African legal philosophy. Accordingly, the team is perfectly positioned to successfully execute the proposed project.
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