Biobanking in Sub-Saharan Africa: A Review of Data Protection Frameworks

Abstract

Introduction:

Biobanks are a foundational infrastructure supporting research at scale and contributing to scientific progress. The increasing collection of samples and associated data presents challenges in terms of both physical and digital storage and handling. In North America and Europe health data protection frameworks have been in place for several years, regulating the use of collected personal data, including health care data, as those typically used by human biobanks. Yet, regulatory frameworks for biobanking, particularly in low- and middle-income settings, are highly fragmented, and little is known in this area.

Objectives:

This review focuses on identifying the health-related data protection frameworks in sub-Saharan African countries, as they are relevant to biobanking.

Methods:

We used complementary literature review approaches to ensure the completeness of our results for biobanking identified as “African,” as well as for “disease-based,” “country-based,” and artificial intelligence–based approaches.

Results:

In total, 56 articles were identified and reviewed in full, 31 health-related acts and frameworks relevant to biobanking, and 24 general data protection acts and frameworks from 37 countries. In some countries, such as Kenya and Zambia, these acts were implemented, in some others, they were not. In most cases, as these regulatory frameworks have been recently created and implemented, there are little or no data relating to the impact of their implementation.

Conclusion:

Our findings confirm that regulatory frameworks for biobanking in sub-Saharan Africa are still in a consistent period of emergence, in an effort by national governments to address the existing fragmented landscape and support the development of research.