Understanding Ethical, Legal and Societal Issues (ELSIs) in Human Biobanking and Genomics for Research and Healthcare in Zimbabwe: The Genomics Inheritance Law Ethics and Society (GILES) initiative

Abstract

Biobanks and human genomics applications are key for understanding health, disease and heredity in Africa and globally. Growing interest in these technologies calls for strengthening relevant legal, ethical and policy systems to address knowledge disparities and ensure protection of society, while supporting advancement of science. In Zimbabwe there is limited understanding of ethical, legal, and societal issues (ELSI) for biobanking and genomics. The Genomics Inheritance Law Ethics and Society (GILES) initiative was established in 2015 to explore the current status and gaps in the ethical and legal frameworks, knowledge among various stakeholders, and to establish capacity for addressing ELSI of biobanking and genomics as applied in biomedical and population research, and healthcare. The project was conducted over a countrywide geographical region and established one of the most comprehensive studies for ELSI of human biobanking and genomics in Africa. This paper outlines the strategy undertaken during the implementation of the GILES initiative and discusses the importance of such an initiative for characterisation of ELSI of human biobanking and genomics in Zimbabwe and Africa.

Beyond translations, perspectives for researchers to consider to enhance comprehension during consent processes for health research in sub-saharan Africa: a scoping review

“…Inconsistent legal norms were compounded by variations between the legal and ethical guidelines within countries. Four studies by Colom [10], Andrews [28] Matimba et al [29] and Wright et al [30] highlight these complexities, including a lack of consistency about what information is essential for research participants to know and a lack of regulatory guidance and language for the collection and use of human biospecimens in many SSA countries Barchi [31]. Secondly, the lack of detail in how to operationalise the core aspects of IC.…”

“…In the papers reviewed, we identified four categories of interventions used to improve comprehension in the consent process. These included translation of consent forms [7,[23][24][25][26][27][28][29][30][31][32], and multimedia medium [21,[33][34][35][36][37][38][39], IC assessment tools and a combination of these strategies [40].…”

Enhancing participant understanding and ethical considerations in clinical trial biospecimen research: Insights from an oncology setting in India

“…Biomaterials play a crucial role in research, and each study procedure should include information on their usage, storage, and the significance of samples in research. Warner et al 2018, Matimba et al 2019. In our study, we conducted a KAP study on the opinions of clinical research participants regarding the utilization of surplus biospecimens.…”