title: Broad Consent for Genomic Research and Biobanking: Perspectives from Low- and Middle-Income Countries.
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.
authors.affiliation: Navrongo Health Research Centre, Ghana Health Service, Navrongo, Ghana; email: ptindana@gmail.com.
authors.forename: Paulina
authors.initials: P
authors.lastname: Tindana
authors.affiliation: Department of Medicine, Faculty of Health Sciences, University of Cape Town, 7925 Cape Town, South Africa; email: jantina.devries@uct.ac.za.
authors.forename: Jantina
authors.initials: J
authors.lastname: de Vries
mesh_terms: D017954:Africa South of the Sahara / Q000453:epidemiology; D018070:Biological Specimen Banks / Q000941:ethics / Q000639:trends*; D003219:Confidentiality; D015894:Genome, Human / Q000235:genetics*; D023281:Genomics / Q000941:ethics / Q000379:methods*; D006801:Humans
keywords: Africa; LMICs; biobanks; broad consent; genomic research