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  • Unknown field was ignored: [version 2; peer review: 3 approved].
AAS Open Res. 2018 Apr 18;1:13. doi: 10.12688/aasopenres.12844.1.

Model framework for governance of genomic research and biobanking in Africa - a content description.

Author information

1
Department of Health Planning, Research & Statistics, Federal Ministry of Health, Abuja, Nigeria.
2
Navrongo Health Research Centre, Ghana Health Service, Navrongo, Ghana.
3
Wellcome Genome Campus Advanced Courses and Scientific Conferences, Cambridge, UK.
4
Global Policy, Wellcome Trust, London, UK.
5
Department of Medicine, University of Cape Town, Cape Town, South Africa.
6
Division of Genomic Medicine, National Human Genome Research Institute, National Institutes of Health, Rockville, MD, USA.
7
Law Department, Middlesex University, London, UK.

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.

KEYWORDS:

biobanking; genomics research; governance

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