Open AccessGenomics governance: advancing justice, fairness and equity through the lens of the African communitarian ethic of Ubuntu
Author(s) -
Nchangwi Syntia Munung,
Jantina de Vries,
Bridget Pratt
Publication year - 2021
Publication title -
medicine, health care and philosophy
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.517
H-Index - 41
eISSN - 1572-8633
pISSN - 1386-7423
DOI - 10.1007/s11019-021-10012-9
Subject(s) - philosophy of medicine , corporate governance , solidarity , medical law , equity (law) , data sharing , accountability , genomics , economic justice , reciprocity (cultural anthropology) , political science , sociology , public relations , bioethics , engineering ethics , environmental ethics , law , social science , biology , management , genetics , medicine , economics , philosophy , alternative medicine , pathology , genome , politics , gene , engineering
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.