Discussion of medical researcher teams' ancillary-care obligations has long been dominated by partial-entrustment theory, developed in 2004 by the author of this article, in collaboration with Leah Belsky. Critics of the limited scope of the special ancillary-care obligations defended by that theory, however, argue that a better theory would take fuller account of the relationship that develops between individual research participants and members of the research team. Nate W. Olson and Thaddeus Metz have each put forward well worked-out versions of such a relationship-based account of ancillary-care obligations. This article critically evaluates these accounts, concluding that while each of them is vulnerable to various criticisms, each also crucially facilitates understanding of this relationship: Olson brings out well how research participants can find that role not just beneficial but also deeply meaningful, and Metz, drawing on African ethical traditions, emphasizes that when things go well, participants are involved as partners in the research effort. Yet the article closes by arguing that the partial-entrustment theory, surprisingly, can take on board each of these lessons. As so enhanced, it may actually be the best available relationship-based theory of this subject.
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Background: Medical researchers in resource-constrained settings must make difficult moral decisions about the provision of ancillary care to participants where additional healthcare needs fall outside the scope of the research and are not provided for by the local healthcare system. We examined research stakeholder perceptions and experiences of ancillary care in biomedical research projects in Malawi.
Methods: We conducted 45 qualitative in-depth interviews with key research stakeholders: researchers, health officials, research ethics committee members, research participants and grants officers from international research funding organisations.
Discussion of medical researcher teams' ancillary-care obligations has long been dominated by partial-entrustment theory, developed in 2004 by the author of this article, in collaboration with Leah Belsky. Critics of the limited scope of the special ancillary-care obligations defended by that theory, however, argue that a better theory would take fuller account of the relationship that develops between individual research participants and members of the research team. Nate W.
View Article and Find Full Text PDFShould institutions fund the feedback of individual findings in genomic research?
J Med Ethics
July 2024
Department of Medicine, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa.
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.
View Article and Find Full Text PDFIntroduction: Numerous guidelines and policies for ethical research practice have evolved over time, how this translates to global health practice in resource-constrained settings is unclear. The purpose of this paper is to describe how the concept of ancillary care has evolved over time and how it is included in the ethics guidelines and policy documents that guide the conduct of research in the global south with both an international focus and providing a specific example of Malawi, where the first author lives and works, as a case study.
Methods: Discourse analysis was conducted on 34 international ethics guidelines and policy documents.
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