Department of Medicine, University of Cape Town, Cape Town, South Africa.
Division of Human Genetics, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa.
Med Health Care Philos. 2021 Sep;24(3):377-388. doi: 10.1007/s11019-021-10012-9. Epub 2021 Apr 2.
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.
人们越来越关注以共同体主义的方法来治理基因组学，并且希望这种治理能够基于公正、公平和团结的原则。然而，几乎没有关于基于共同体主义的原则或价值观如何为基因组学研究的治理提供信息、支持或指导的概念性研究。鉴于团结是非洲共同体伦理和正义理论“Ubuntu”的一个关键原则，人们对于 Ubuntu 在多大程度上可以为非洲的基因组学研究治理提供指导越来越感兴趣。为此，我们对 Ubuntu 进行了概念分析，目的是确定可以为面向公平的基因组学研究治理提供信息的原则。团结、互惠、开放共享、问责制、相互信任、审议决策和包容性被确定为核心原则，这些原则直接涉及到非洲基因组学研究中的不同宏观伦理问题，例如：研究人群和非洲研究人员的剥削、公平获取和使用基因组学数据、利益分享、基因组学可能扩大全球健康不平等以及知识产权和专利等资源的公平分配。我们使用所确定的原则为非洲的基因组学治理制定了伦理指导。
