Alice Matimba

Principal Investigator: Dr Alice Matimba

Genomics Inheritance Legal and Social Issues

The Genomics Inheritance Legal and Social Issues – GILES, is a collaborative project by health professionals, social scientists, and regulatory authorities at the University of Zimbabwe College of Health Sciences (UZCHS), Africa University (AU), Medical Research Council of Zimbabwe (MRCZ) and Stanford University (USA). The main objective of the GILES program, is to understand the current, emerging and persisting ethical, legal and societal issues (ELSI) related to bio- and data resources for human genomics activities which involve biospecimen collection, storage, data sharing and use (biobanking, databases and bioinformatics) in Zimbabwe. Due to the diverse social, cultural and religious beliefs within Africa, compounded by cross-border and collaborative nature of human genomics research and application, confidentiality risks, informed consent processes, and implied economic value of research findings, ELSI policies require specific inclusion of guidelines that address the increasing use of human genomics technologies. We will examine knowledge, attitudes and practices of research scientists, and health professionals who collect biospecimens which is targeted for, or has potential to be used for human genomics research or clinical diagnosis. We will assess the level of understanding, expectations and experiences of current and prospective research participants in biospecimen collection, storage, genetic analysis, data use and benefit sharing for human genomics research and applications. The project will provide empirical data for ELSIs in genomics research in as well as guide the development of a stakeholder engagement forum inclusive of, health and education professionals, research scientists and policy makers.