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
AuthorsMunung, Nchangwi Syntia, de Vries, Jantina and Pratt, Bridget
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.

KeywordsAfrica; bioethics; equity; genomics; global health justice; governance; research ethics
Year2022
JournalBioethics
Journal citation36 (4), pp. 411-422
PublisherJohn Wiley & Sons Ltd
ISSN0269-9702
Digital Object Identifier (DOI)https://doi.org/10.1111/bioe.12995
PubMed ID35041227
Scopus EID2-s2.0-85122827018
PubMed Central IDPMC9050794
Open accessPublished as green open access
Page range411-422
FunderUniversity 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 statusPublished
Publication dates
Online18 Jan 2022
Publication process dates
Accepted25 Nov 2021
Deposited05 Jun 2023
Grant IDU01HG008226
U54HG009790
U24HL135600
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