title: Biobank and Genomic Research in Uganda: Are Extant Privacy and Confidentiality Regimes Adequate?
abstract: Not many African countries have been able to develop a robust 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, countries in the region have been unable to make significant strides in medical research. But there are exceptions. Amongst the few seeming success stories is Uganda. Nonetheless, although the country has developed what appears to be a functional framework to govern genomic research and biobanking, the consistency of key provisions with international standards, especially those pertaining to privacy of research participants and confidentiality of their health information, is not at all clear. Yet, making this determination - the main objective of this article - is critical in determining the adequacy of protection available to human research subjects in the country.
authors.affiliation: Obiajulu Nnamuchi, J.D., LL.M., M.A., S.J.D., is an Assistant Professor, Faculty of Law, at the University of Nigeria. He is also President of the Centre for Health, Bioethics and Human Rights (CHBHR) and Director of its section on Bio-ethics. Dr. Nnamuchi's scholarship focuses on the intersection of health and human rights, global health, health governance and financing, and law and ethics of medical practice.
authors.forename: Obiajulu
authors.initials: O
authors.lastname: Nnamuchi
mesh_terms: D018070:Biological Specimen Banks; D003219:Confidentiality; D023281:Genomics; D006801:Humans; D018907:Privacy; D014454:Uganda