Series
The 5th ELSI Congress - ELSIcon2022
ELSIcon2022 Paper: Symbolic Legislation and the Regulation of Stroke Biobanking and Genomics Research in Sub-Saharan Africa
Type
Conference
ELSIcon2022 • Paper • May 27, 2022
Muyiwa Adigun, Babatunde R. Ojebuyi, Joshua Akinyemi, Kolawole Wahab, Albert Alpalu, Fred S. Sarfo, Lukman F. Owolabi, Rabiu Musbahu, Reginald Obiako, Mayowa Ogunronbi, Michelle Nichols, Carolyn Jenkins, Ayodele Jegede, Raj Kalaria, Mayowa Owolabi, Bruce Ovbiagele, Oyedunni Arulogun, Rufus Akinyemi
Stroke is a major cause of death in Sub-Saharan Africa (SSA) and genetic factors appear to play a part. This led to the development of stroke bio-banking and genomics research in SSA. Existing stroke studies have focused on causes, incidence rates, fatalities and effects. However, scant attention has been paid to the legal issues about stroke bio-banking and genomics research in the sub-region. Therefore, this article examines how genomics research and stroke bio-banking in SSA can be regulated through legislation. The article reports that there are germane issues to be addressed such as appropriate consent model, commercial use of biological samples, ownership right in biological samples and return of research results but that the position of the law on these issues is not satisfactory because there are no statute directly regulating them while existing regulations in these countries are either absent, outdated, conservative or difficult to navigate. The article therefore applies the theory of symbolic legislation and argues for legislative intervention through positive symbolic approach, recommending that the statute to be enacted should only address policy issues by way of legal rules without being detailed while the understanding of the rules should be fostered in explanatory notes by giving examples borne of decided cases and cases settled out of court together with the attachment of the ethical guidelines prepared by Human Heredity and Health in Africa (H3 Africa) and where they are inadequate recourse may be had to other ethical guidelines subject to the demands of local circumstances.
Tags
Keywords
Laws and research sites
Biobanking and genomic databases
Paper
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