Biobank and Genomic Research in Uganda: Are Extant Privacy and Confidentiality Regimes Adequate?

Not many countries in Africa have been able to develop a system for regulating health research within their respective jurisdictions, particularly in the realm of biobanking and genomics. This is not without reason. Aside from underdevelopment and all that it entails or perhaps in consequence thereof, very few countries in the region have made significant strides in medical research. Amongst the few seemingly success stories is Uganda. Nonetheless, although the country has developed what appears to be a functional framework to govern genomic research and banking of biospecimens, the consistency of its provisions with international standard, especially those pertaining to privacy of research participants and confidentiality of their health information, is not at all clear. Yet, making this determination – and that is the main objective of this paper – is critical in terms of determining the adequacy of protection available to human research subjects in the country.