Bio- and data resources including biobanks and databases, play an important role in human genomics research and applications towards addressing problems of health and disease in Africa. There are unclear ethical and legal structures to oversee the operation of the current and emerging biobanks and data resources. In particular, ethical, legal and societal issues (ELSI) need to be addressed for the successful the governance of bioresources. In Zimbabwe, anecdotally, there are practice of ELSI, but there are no empirical data about the status and needs for ELSI in human bio- and data resource use and sharing related to human genomics. There is limited understanding of public knowledge, perceptions and beliefs regarding human genomics bioresource use and data sharing. Currently there is limited research and technological platforms for ELSI education in human genetic/genomic research and applications in Zimbabwe. Therefore, as a start, the GILES program will anticipate and address 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 in Zimbabwe. We will use qualitative methods to address the following specific aims: (i) review and evaluate activities and educational needs for ELSI related to bio- and data resources for human genomics in Zimbabwe (ii) establish knowledge, attitudes and perceptions of human biospecimen collection and use in genomics research and applications and (iii) strengthen capacity for ELSI of bio- and data resources for human genomics in Zimbabwe. Desk reviews and workshops will be conducted to determine the needs for ELSIs to address current and emerging issues in human genomics bioresources in Zimbabwe. Focus group discussions will explore perspectives of current and prospective research participants. This will guide the development of education as well as a stakeholder engagement forum inclusive of universities, health professionals as well as health and education policy makers. Finally, the GILES program will initiate the development of educational tools to train students, faculty, research scientists and institutional ethics review committee members, as well as build awareness to the public.
Human sample and information collection and use are important for the study of the contribution of heredity to health and disease in Africa and globally. These activities require ethical structures which ensure optimal participation, protectio and respect of participants and researchers within a legal system while acknowledging socio-cultural beliefs and perspectives. The GILES programmer will use a multi-disciplinary approach to build capacity for addressing ELSI of human bioresources in Zimbabwe.
