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

Annual Review of Genomics and Human Genetics
Paulina Tindana, Jantina de Vries

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.

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Citations

Dec 26, 2017·Global Health, Epidemiology and Genomics·P TindanaUNKNOWN H3Africa Community Engagement Working Group
Dec 22, 2020·Global Bioethics = Problemi Di Bioetica·Paulina TindanaMichael Parker
Jan 13, 2021·Nature Reviews. Genetics·Luisa PereiraMichèle Ramsay
Apr 3, 2021·Medicine, Health Care, and Philosophy·Nchangwi Syntia MunungBridget Pratt
Apr 3, 2021·Omics : a Journal of Integrative Biology·Yosr HamdiSamar Kamal Kassim
Jun 5, 2021·Personalized Medicine·Maria KorominaGeorge P Patrinos
Jul 29, 2021·BMC Medical Ethics·Allan SudoiDorcas Kamuya

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