U01MH127690

DS-I Africa - Law - 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 that the data they have generated cannot be used as planned. Without knowledge of the law, scientists also risk wasting resources, legal liability, and even criminal sanctions. Therefore, 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. To facilitate health discovery and innovation that uses data science, legal clarity will be provided on a variety of critical legal themes. 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. This will 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.

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 a 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. These recommendations will empower policymakers in Africa to make the relevant law more attuned to the needs and expectations of the people of Africa.

The project team consists of leading law academics from different regions in Africa, boasting 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.

University Of Kwazulu-Natal

NOT APPLICABLE

93.310 - Trans-NIH Research Support

National Institute of Mental Health (NIMH) [HHS - NIH]

National Institute of Allergy and Infectious Diseases (NIAID) [HHS - NIH]

South Africa

Foreign

Harnessing Data Science for Health Discovery and Innovation in Africa (DS-I Africa): Ethical, Legal, and Social Implications Research (U01 Clinical Trial Not Allowed) (RFA-RM-20-017)

Amendment Since initial award the End Date has been extended from 07/31/24 to 07/31/25 and the total obligations have increased 196% from $398,940 to $1,178,898.