ArticleMedicine, health care, and philosophy2021
Genomics governance: advancing justice, fairness and equity through the lens of the African communitarian ethic of Ubuntu.
Article in Medicine, health care, and philosophy, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 20 papers.
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Who cites it
20 citing papers in PubMed.
- From Acceptable Profit to Fair Return: Operational Benefit-Sharing Models for Induced Pluripotent Stem Cell Research Using Legacy Samples from Low- and Middle-Income Countries.Research square · 2026Article
- Determining a role for Patient and Public Involvement and Engagement (PPIE) in genomic data governance for cancer care.European journal of human genetics : EJHG · 2026Article
- Decolonizing genomic data ownership: a qualitative study of legal practices and access in Uganda.BMC medical ethics · 2026Article
- Understandings and practices of solidarity in global health: a scoping review of the literature.Globalization and health · 2026Article
- Charting neuroethics discourse in Africa: A scoping review of ethical issues of neuroscience research in Africa.IBRO neuroscience reports · 2025Article
- Decolonisation and Self-Regulation as Alternative Paths to Data Science Health Research Governance in Africa.Wellcome open research · 2025Article
- Accelerating cancer genomics research in Sub-Saharan Africa.Frontiers in oncology · 2025Article
- Science and Society: Pathways to Equitable Access and Delivery of Genomics Medicine in Africa.Current genetic medicine reports · 2025Review
- Data protection legislation in Africa and pathways for enhancing compliance in big data health research.Health research policy and systems · 2024Article
- Data as scientific currency: Challenges experienced by researchers with sharing health data in sub-Saharan Africa.PLOS digital health · 2024Article
- Trust as moral currency: Perspectives of health researchers in sub-Saharan Africa on strategies to promote equitable data sharing.PLOS digital health · 2024Article
- Researchers' Perspectives Regarding Ethical Issues of Biobank Research in the Arab Region.Biopreservation and biobanking · 2024Article
- Mutuality as a method: advancing a social paradigm for global mental health through mutual learning.Social psychiatry and psychiatric epidemiology · 2024Article
- Bioinformatics proficiency among African students.Frontiers in bioinformatics · 2024Article
- Genomic Data Sharing: Navigating The Ethical Issues In Collaborative Research Relationships Between The Global North-South.African journal of bioethics · 2024Article
- Public health use of HIV phylogenetic data in sub-Saharan Africa: ethical issues.BMJ global health · 2023Review
- Article
- African genomic data sharing and the struggle for equitable benefit.Patterns (New York, N.Y.) · 2022Article
- Epistemic justice, African values and feedback of findings in African genomics research.Global bioethics = Problemi di bioetica · 2022Article
- Rethinking benefit sharing in collaborative human genetic research from an Afrocommunitarian perspective.Frontiers in genetics · 2022Article
Corrections and comments
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Authors and funding
3 authors.
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Abstract
There is growing interest for a communitarian approach to the governance of genomics, and for such governance to be grounded in principles of justice, equity and solidarity. However, there is a near absence of conceptual studies on how communitarian-based principles, or values, may inform, support or guide the governance of genomics research. Given that solidarity is a key principle in Ubuntu, an African communitarian ethic and theory of justice, there is emerging interest about the extent to which Ubuntu could offer guidance for the governance of genomics research in Africa. To this effect, we undertook a conceptual analysis of Ubuntu with the goal of identifying principles that could inform equity-oriented governance of genomics research. Solidarity, reciprocity, open sharing, accountability, mutual trust, deliberative decision-making and inclusivity were identified as core principles that speak directly to the different macro-level ethical issues in genomics research in Africa such as: the exploitation of study populations and African researchers, equitable access and use of genomics data, benefit sharing, the possibility of genomics to widen global health inequities and the fair distribution of resources such as intellectual property and patents. We use the identified the principles to develop ethical guidance for genomics governance in Africa.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.