Steve Biko Centre for Bioethics, University of the Witwatersrand Faculty of Health Sciences, Johannesburg, Gauteng, South Africa
Department of Bioethics, National Institutes of Health, Bethesda, Maryland, USA.
J Med Ethics. 2024 Jul 23;50(8):569-574. doi: 10.1136/medethics-2021-107992.
The article argues the thesis that institutions have a obligation to fund the feedback of individual findings in genomic research conducted on the African continent by drawing arguments from an underexplored Afro-communitarian view of distributive justice and rights of researchers to be aided. Whilst some studies have explored how institutions have a duty to support return as a form of ancillary care or additional foreseeable service in research by mostly appealing to dominant principles and theories in the Global North, this mostly explores this question by appealing to underexplored African philosophy. This is a new way of thinking about institutional responsibility to fund feedback and responds to the call to decolonise health research in Africa. Further studies are required to study how this obligation will interact with social contexts and an institution's extant relationships to find an actual duty. The research community should also work out procedures, policies and governance structures to facilitate feedback. In our opinion, though the impacts of feeding back can inform how institutions think about their actual duty, these do not obliterate the binding duty to fund feedback.
本文从一个尚未充分探索的非洲共同体主义分配正义观和研究人员获得援助的权利的角度出发,论证了机构有义务为在非洲大陆进行的基因组研究中的个体发现的反馈提供资金,从而支持这一论点。虽然一些研究已经探讨了机构有责任支持回报的问题,认为回报是研究中辅助护理或额外可预见服务的一种形式,主要诉诸于北美主导的原则和理论,但这主要是通过诉诸于尚未充分探索的非洲哲学来探讨这个问题。这是一种思考机构资助反馈责任的新方式,回应了在非洲使健康研究非殖民化的呼吁。需要进一步的研究来研究这种义务将如何与社会背景和机构现有的关系相互作用,以找到实际的义务。研究界还应该制定程序、政策和治理结构,以促进反馈。我们认为,尽管反馈的影响可以告知机构如何看待其实际义务,但这些并不能消除资助反馈的强制性义务。