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Annu Rev Genomics Hum Genet. 2016 Aug 31;17:375-93. doi: 10.1146/annurev-genom-083115-022456. Epub 2016 Feb 22.

Broad Consent for Genomic Research and Biobanking: Perspectives from Low- and Middle-Income Countries.

Author information

1
Navrongo Health Research Centre, Ghana Health Service, Navrongo, Ghana; email: ptindana@gmail.com.
2
Department of Medicine, Faculty of Health Sciences, University of Cape Town, 7925 Cape Town, South Africa; email: jantina.devries@uct.ac.za.

Abstract

Genomic research and biobanking are increasingly being conducted in the context of collaborations between researchers in high-income countries and those in low- and middle-income countries. Although these scientific advancements have presented unique opportunities for researchers to contribute to cutting-edge scientific projects and address important health problems, they have also challenged existing ethical and regulatory frameworks, particularly in sub-Saharan Africa. Broad consent is a model that allows the use of human biological samples and associated data in future research that may be unrelated to the original study. Drawing on emerging perspectives in low- and middle-income countries, we argue that broad consent is equivalent to consent to governance and that a robust governance framework for genomics and biobanking should seek to promote global health and research equity and take into account five key elements: respect, authentic community engagement and trust building, the preservation of privacy and confidentiality, feedback of results, and capacity strengthening.

KEYWORDS:

Africa; LMICs; biobanks; broad consent; genomic research

[Indexed for MEDLINE]

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