Abstract
Genomic research and biobanking are expanding globally, with a promise to fast-track the research needed to improve approaches to disease treatment and prevention through scientific collaborations such as the Human Heredity and Health in Africa (H3Africa) initiative. Integral to this type of research is the availability of samples and data for research. The need for broad access brings along a host of ethical concerns, including those related to privacy and confidentiality, as well as fairness and equity in access and capacity to utilise these samples between scientists from the high income and low income countries. Addressing these concerns while promoting genomic research, especially in Africa, requires the implementation of a sound governance framework. In this paper, we describe the contents of a Framework for Best Practice for Genomics Research and biobanking in Africa that was developed, under the auspices of the H3Africa initiative. This framework is broad enough to be used and adapted by African countries to facilitate the development of country-specific guidelines and to help improve the conduct and governance of genomics research.
Highlights
The complete mapping of the human genome[1] brought along with it possibilities to better understand human health and its determinants which would help improve the way diseases and health conditions are managed
The number of genomic research studies and the need for biobanking has been growing globally[2,3,4], with a steady increase in the number of such studies being conducted on the African continent[5]
In order to fast-track realization of the benefits inherent in genomics research, the global community agreed to principles of ‘open science’, which promotes the value of sharing and reuse of data and samples as a critical component of the contemporary scientific landscape[8,9,10]
Summary
The complete mapping of the human genome[1] brought along with it possibilities to better understand human health and its determinants which would help improve the way diseases and health conditions are managed. One way to remedy such practices is by fostering sustainable capacity building for African intellectual leadership in the conceptualization, design, implementation and reporting of locally appropriate studies30,34,35 – this is one of the core elements of the framework described here It is one of the main goals of the H3Africa initiative including support for equipment and infrastructure to enable researchers to develop biobanks and conduct large-scale genomics studies. Key elements of the Framework for Best Practice In addition to these core principles, the Framework describes ten key areas that need to be addressed in order to ensure that the core principles elucidated in the framework are realised They include: African intellectual leadership; Consent; Community engagement; Ethics review; Avoidance of group harm and stigma; Benefit sharing; Capacity building; International collaboration and export of samples; Feedback of individual genetic findings; and Good governance. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript
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