Ethox

An open and frank discussion about the extent and impact of per diems on the functioning of health interventions, systems and research is important. While the 'culture of per diems’ can be associated with civil servants involved in health care projects and delivery, we suggest that a more balanced argument would be presented, if per diems were discussed in relation to macroeconomic and structural influences.This does not preclude examination in an African context but it is a reminder that this issue is not inherently African. All actors in global health should be named and examined accordingly.

Data collectors play a vital role in producing scientific knowledge. They are also an important component in understanding the practice of bioethics. Yet, very little attention has been given to their everyday experiences or the context in which they are expected to undertake these tasks. This paper argues that while there has been extensive philosophical attention given to 'the what' and 'the why' in bioethics - what action is taken place and why - these should be considered along 'the who' - who are the individuals tasked with bioethics and what can their insights bring to macro-level and abstract discussions of bioethics. This paper will draw on the philosophical theories of Paul Ricoeur which compliments a sociological examination of data collectors experiences and use of their agency coupled with a concern for contextual and institutional factors in which they worked. In emphasising everyday experiences and contexts, I will argue that data collectors' practice of bioethics was shaped by their position at the frontline of face-to-face interactions with medical research participants and community members, alongside their own personal ethical values and motivations. Institutional interpretations of bioethics also imposed certain parameters on their bioethical practice but these were generally peripheral to their sense of obligation and the expectations conferred in witnessing the needs and suffering of those they encountered during their quotidian research duties. This paper will demonstrate that although the principle of autonomy has dominated discussions of bioethics and gaining informed consent seen as a central facet of ethical research by many research institutions, for data collectors this principle was seldom the most important marker of their ethical practice. Instead, data collectors were concerned with remedying the dilemmas they encountered through enacting their own interpretations of justice and beneficence and imposing their own agency on the circumstances they experienced. Their practice of bioethics demonstrates their contribution to the conduct of research and the shortcomings of an over-emphasis on autonomy.

This paper will explore the concept of 'fail safe' ethics in the FEM PrEP trial, and the practice of research and ethics on the ground. FEM-PrEP examined the efficacy of PrEP in African women after promising outcomes in research conducted with MSM. This was a hugely optimistic time and FEM-PrEP was mobilised using rights-based ethical arguments that women should have access to PrEP. This paper will present data collected during an ethnographic study of frontline research workers involved in FEM-PrEP. During our discussions, 'fail-safe' ethics emerged as concept that encapsulated their confidence that their ethics could not fail. However, in 2011, FEM-PrEP was halted and deemed a failure. The women involved in the study were held responsible because contrary to researcher's expectations they were not taking the oral PrEP being researched. This examination of FEM-PrEP will show that ethical arguments are increasingly deployed to mobilise, maintain and in some cases stop trials in ways which, at times, are superseded or co-opted by other interests. While promoting the interests of women, rights-based approaches are argued to indirectly justify the continuation of individualised, biomedical interventions which have been problematic in other women-centred trials. In this examination of FEM-PrEP, the rights-based approach obscured: ethical concerns beyond access to PrEP; the complexities of power relationships between donor and host countries; the operations of the HIV industry in research-saturated areas and the cumulative effect of unfilled expectations in HIV research and how this has shaped ideas of research and ethics.

This article explores the views of frontline research staff in different Sub-Saharan African contexts on the notion of choice in biomedical research. It argues that the current emphasis on individual choice, in the conduct of biomedical research, ignores significant structural and contextual factors in resource-limited settings. These factors severely constrain individual options and often make biomedical research enrolment the most amenable route to healthcare for the world's poorest. From the position of frontline research staff, local contextual factors and structural issues narrowly frame the parameters within which many prospective participants are asked to choose, to such an extent that individuals are effectively presented with an 'empty choice'. The article draws on ethnographic and interview data and insights gained through graphic elucidation techniques. It demonstrates that for frontline research staff, macro-level structural factors and their bearing on everyday realities shape what choice in biomedical research participation means in practice.

Data fabrication, incorrect collection strategies and poor data management, are considered detrimental to high-quality scientific research. While poor data management have been occasionally excused, fabrication constitutes a cardinal sin e scientific misconduct. Scholarly examinations of fabrication usually seek to expose and capture its prevalence and, less frequently, its consequences and causes. Most accounts centre on high-income countries, individual senior researchers and scientists who are portrayed as irrational, immoral or deceptive. We argue that such accounts contain limitations in overlooking data collected in 'the field', in low-income countries, by junior researchers and non-scientists. Furthermore, the processes and motivations for fabrication and subversive practices are under-examined. Drawing on two separate ethnogra-phies, conducted in 2004e2009 in medical research projects in sub-Saharan Africa, this paper investigates fabrication among fieldworkers using data from observations and informal conversations, 68 interviews and 7 Focus Group Discussions involving diverse stakeholders. Based on an interpretative approach, we examined fieldworkers' accounts that fabrications were motivated by irreconcilable moral concerns, faltering morale resulting from poor management, and inadequate institutional support. To fieldworkers, data fabrication constituted a 'tool' for managing their quotidian challenges. Fabrications ranged from active to passive acts, to subvert, resist and readdress tensions deriving from employment inequalities and challenging socioeconomic conditions. We show that geographical and hierarchical distance between high-ranking research actors and fieldworkers in contemporary configurations of international medical research can compartmentalise, and ultimately undermine, the relationships necessary to produce high-quality data. In focusing on fieldworkers, we argue for the inclusion of wide-ranging perspectives in examinations of data fabrication.

Background: Greece has been severely affected by the 2008 global economic crisis and its health system was, and still is, among the national institutions most shaped by its effects. Methods: In 2014, this qualitative study examined these changes through in-depth interviews with 22 frontline healthcare professionals in five different locations in mainland Greece. These interviews with nurses, doctors and pharmacists explored perceptions of austerity and how ideas of professionalism were challenged and revised by these measures.

Background: A patient charter is an explicit declaration of the rights of patients within a particular health care setting. In early 2020 the Save the Children Emergency Health Unit deployed to Cox's Bazar Bangladesh to support the establishment of a severe acute respiratory infection isolation and treatment centre as part of the COVID-19 response. We developed a charter of patient rights and had it translated into Bangla and Burmese; however, the charter remained inaccessible to Rohingya and members of the host community with low literacy.

Fakes have become a matter of concern across global health. Commissioning inquiry into presumed fake practices in global health requires both a pre-existing sense of what would constitute real provision and a suspicion that it is not being offered. In this Position Piece, we analyse the research methods being used to identify and reveal other—presumed—fakes in global health provision. We put forward the concept of the ‘second-order fake’—the fake that is used to reveal a fake—to draw attention to the methodological politics at stake in the use of the fake. By reviewing historical cases of the creation of methods of deception, we analyse the assumptions they bring into global health from other disciplines. We foreground the promises of revelation that are embedded in probes that rely on fakes to uncover fakes. We suggest that despite the growing prevalence of methods which themselves deploy fakes to find fakes, these techniques bring us no closer to understanding the lived ambiguitie...

Background While community engagement is increasingly promoted in global health research to improve ethical research practice, it can sometimes coerce participation and thereby compromise ethical research. This paper seeks to discuss some of the ethical issues arising from community engagement in a low resource setting. Methods A qualitative study design focusing on the engagement activities of three biomedical research projects as ethnographic case studies was used to gain in-depth understanding of community engagement as experienced by multiple stakeholders in Malawi. Data was collected through participant observation, 43 In-depth interviews and 17 focus group discussions with community leaders, research staff, community members and research participants. Thematic analysis was used to analyse and interpret the findings. Results The results showed that structural coercion arose due to an interplay of factors pertaining to social-economic context, study design and power relations am...