Towards equitable genomics governance in Africa : Guiding principles from theories of global health governance and the African moral theory of Ubuntu
Journal article
Munung, Nchangwi Syntia, de Vries, Jantina and Pratt, Bridget. (2022). Towards equitable genomics governance in Africa : Guiding principles from theories of global health governance and the African moral theory of Ubuntu. Bioethics. 36(4), pp. 411-422. https://doi.org/10.1111/bioe.12995
Authors | Munung, Nchangwi Syntia, de Vries, Jantina and Pratt, Bridget |
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Abstract | The post-genomics era promises a revolution characterized by precision medicine and the integration of genomics into almost every area of biomedical research. At the same time, there are concerns that if care is not taken, the genomics revolution may widen global inequities in science and health. In Africa, these concerns are primarily linked to the underrepresentation of African populations in genomics research, limited genomics research capacity in Africa and associated macro-level justice issues such as benefit sharing, inequitable international research collaborations, and the contribution of genomics to the health and research priorities of Africa. Addressing these concerns requires an in-depth reflection on how the ideals of global justice and equity may be advanced in genomics research. To contribute to the limited but growing scholarship on global genomics equity, especially in the African context, we performed a conceptual analysis of three accounts of justice and governance namely, Ubuntu, shared health governance and global governance of health, with the aim of identifying principles that could inform genomics governance in Africa. We used a convergence approach in the conceptual analysis, resulting in the identification of nine principles namely: solidarity, furthering the ideals of health justice, reciprocity, shared decision-making, shared resources, shared responsibility, mutual trust, transparency, and mutual collective accountability. Examples of how the principles may be applied are provided. We recommend that these principles should form the foundation of any mechanism that seeks to systematically advance justice, fairness and equity in genomics research in Africa and more broadly, global health and science equity. |
Keywords | Africa; bioethics; equity; genomics; global health justice; governance; research ethics |
Year | 2022 |
Journal | Bioethics |
Journal citation | 36 (4), pp. 411-422 |
Publisher | John Wiley & Sons Ltd |
ISSN | 0269-9702 |
Digital Object Identifier (DOI) | https://doi.org/10.1111/bioe.12995 |
PubMed ID | 35041227 |
Scopus EID | 2-s2.0-85122827018 |
PubMed Central ID | PMC9050794 |
Open access | Published as green open access |
Page range | 411-422 |
Funder | University of Melbourne |
National Human Genome Research Institute (NHGRI), National Institutes of Health | |
National Heart, Lung, and Blood Institute (NHLBI), National Institutes of Health | |
Author's accepted manuscript | License All rights reserved File Access Level Open |
Publisher's version | License All rights reserved File Access Level Controlled |
Output status | Published |
Publication dates | |
Online | 18 Jan 2022 |
Publication process dates | |
Accepted | 25 Nov 2021 |
Deposited | 05 Jun 2023 |
Grant ID | U01HG008226 |
U54HG009790 | |
U24HL135600 |
https://acuresearchbank.acu.edu.au/item/8z1q4/towards-equitable-genomics-governance-in-africa-guiding-principles-from-theories-of-global-health-governance-and-the-african-moral-theory-of-ubuntu
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Author's accepted manuscript
AM_Munung_2022_Towards_equitable_genomics_governance_in_Africa.pdf | |
License: All rights reserved | |
File access level: Open |
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