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

Ethical, Legal, and Social Implications (ELSI) Research: Methods and Approaches

“…The project is utilizing a mixed‐methods approach based on two elements: the first is research partnerships with the community and various stakeholders with the aim of generating “context‐relevant” and “culture‐appropriate” ELSI knowledge and interventions, and the second is a “novel intervention program” that will apply such interventions to enhance community participation in and research capacity building for neurobiobanking and genomic research activities in Africa. Similarly, in its pioneering and wide‐ranging study of the ELSI of human biobanking and genomics in Africa, the Genomics Inheritance Law Ethics and Society (GILES) initiative adopted a multi‐methods approach based on document reviews, targeted informant interviews, focus group discussions, and fieldwork collaboration with health authorities (Matimba et al., 2019). What these approaches have in common is a focus on culturally and contextually grounded research conducted by and for the benefit of diverse audiences , including research participants and the general community.…”

“…Attempts to address these shortcomings have gained momentum in recent years, particularly among scholars working in resource‐constrained settings and in the global South. These scholars have pioneered approaches that combine new and conventional methods, including community participation, public deliberation, citizen juries, fieldwork, ethnography and social observation, local and contextual cosmologies and philosophies, and interventions designed to facilitate capacity building for ELSI‐related careers (Akinyemi et al., 2020; Blacksher et al., 2021; Matimba et al., 2019; Reedy et al., 2020; Treadwell et al., 2017). An excellent example of these approaches is the African Neurobiobank for Precision Stroke Medicine ELSI Project, which is a consortium project studying the ELSI of biological data repositories for stroke genomic research in Africa (Akinyemi et al., 2020).…”