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2.
PLOS Glob Public Health ; 4(2): e0002540, 2024.
Article in English | MEDLINE | ID: mdl-38354112

ABSTRACT

BACKGROUND: Recently, global health has been confronting its visual culture, historically modulated by colonialism, racism and abusive representation. There have been international calls to promote ethicality of visual practices. However, despite this focus on the history and the institutional use of global health images, little is known about how in practice contemporary images are created in communities, and how consent to be in photographs is obtained. METHODS: We conducted semi-structured interviews with 29 global health photographers about the ethical and practical challenges they experience in creating global health images, and thematically analysed the findings. FINDINGS: The following themes were identified: (1) global health photography is undergoing a marketing transformation and images are being increasingly moderated; (2) photographers routinely negotiate stereotypical and abusive tropes purposefully sought by organisations; (3) local scenes are modified, enhanced and staged to achieve a desired marketing effect; (4) 'empowerment' is becoming an increasingly prominent dehumanising visual trope; (5) consent to be photographed can be jeopardised by power imbalances, illiteracy, fears and trust; (6) organisations sometimes problematically recycle images. INTERPRETATION/DISCUSSION: This research has identified practical and ethical issues experienced by global health photographers, suggesting that the production cycle of global health images can be easily abused. The detected themes raise questions of responsibility and accountability, and require further transdisciplinary discussion, especially if promoting ethical photojournalism is the goal for 21st century global health.

5.
Wellcome Open Res ; 8: 191, 2023.
Article in English | MEDLINE | ID: mdl-38313470

ABSTRACT

In recent years, the global health community has increasingly reported the problem of 'invisibility': aspects of health and wellbeing, particularly amongst the world's most marginalized and impoverished people, that are systematically overlooked and ignored by people and institutions in relative positions of power. It is unclear how to realistically manage global health invisibility within bioethics and other social science disciplines and move forward. In this letter, we reflect on several case studies of invisibility experienced by people in Brazil, Malaysia, West Africa and other transnational contexts. Highlighting the complex nature of invisibility and its interconnectedness with social, political and economic issues and trends, we argue that while local and targeted interventions might provide relief and comfort locally, they will not be able to solve the underlying causes of invisibility. Building from the shared lessons of case study presentations at an Oxford-Johns Hopkins Global Infectious Disease Ethics Collaborative (GLIDE), we argue that in dealing with an intersectional issue such as invisibility, twenty-first century global health bioethics could pursue a more 'disturbing' framework, challenging the narrow comforting solutions which take as a given the sociomaterial inequalities of the status quo. We highlight that comforting and disturbing bioethical frameworks should not be considered as opposing sides, but as two approaches working in tandem in order to achieve the internationally set global health milestones of providing better health and wellbeing for everyone. Insights from sociology, anthropology, postcolonial studies, history, feminist studies and other styles of critical reasoning have long been disturbing to grand narratives of people and their conditions. To rediscover the ethos of the WHO Alma Ata Declaration-a vision of "health for all by the year 2000"-these thinking tools will be necessary aids in developing cooperation and support beyond the narrow market logic that dominates the landscape of contemporary global health.

6.
Glob Bioeth ; 31(1): 13-28, 2020.
Article in English | MEDLINE | ID: mdl-32158366

ABSTRACT

Participant non-compliance and withdrawal from randomized clinical trials has increased focus on analysing the results from the "per-protocol" population that complies with a trial's protocols. There is no clear understanding of what shapes protocol compliance in practice. In this paper, I theorize clinical research from the perspective of participants in an Ebola vaccine trial by analysing the practices that contributed to very high compliance rates. In this setting, per-protocol compliance became an essential component in forming a class of "proper" researchers and participants working together in the rapidly expanding market of clinical research. Bioethics supports participants' right to withdraw from research as an ethical safeguard in the process. But participants seeking affiliations with powerful institutions may voluntarily embrace their trial responsibilities over a right to withdraw. To understand this phenomenon, this analysis uses the notion of bioetiquette - the set of rules specifying "proper" and "improper" trial subjects and behaviours - which runs in the shadow of formal bioethics in trials and requires careful transdisciplinary examination.

7.
Glob Public Health ; 15(1): 13-21, 2020 01.
Article in English | MEDLINE | ID: mdl-31237180

ABSTRACT

Ensuring that biomedical information about research procedures is adequately understood by participants and their communities is key for conducting ethical research. This article explores participants' understanding of trial procedures for an experimental vaccine against Ebola virus disease (EVD) in a West African context. We found that some trial participants believed there was a chance of contracting Ebola and other sicknesses from the vaccine, and others believed both the vaccine and the placebo control would be able to prevent other illnesses than EVD. While these beliefs might be understood as misconceptions about the vaccine trial, this paper shows that such a conclusion is problematic because it excludes local explanatory health models and logics of causality. The paper invites bioethicists to work with anthropologists to take seriously different models of health knowledge in global health research. Investigating and addressing such differences could be the key to understanding human subjects' motives for participation, and to creating space for studies of empirical ethics.


Subject(s)
Attitude to Health , Clinical Trials as Topic , Ebola Vaccines/therapeutic use , Hemorrhagic Fever, Ebola/prevention & control , Therapeutic Misconception , Africa, Western , Biomedical Research/ethics , Comprehension , Cultural Diversity , Disease Outbreaks/prevention & control , Global Health , Hemorrhagic Fever, Ebola/epidemiology , Hemorrhagic Fever, Ebola/therapy , Humans
8.
Glob Bioeth ; 30(1): 1-18, 2019.
Article in English | MEDLINE | ID: mdl-30692879

ABSTRACT

The provision of gifts and payments for healthy volunteer subjects remains an important topic in global health research ethics. This paper provides empirical insights into theoretical debates by documenting participants' perspectives on an Ebola vaccine trial in West Africa. This trial provided hundreds of Africans with regular payments, food packages and certificates for participation. The researchers conducting the trials considered these socioeconomic provisions to be gifts in accordance with contemporary ethical standards and principles. Trial participants viewed them differently, however, approaching trial participation as a means for training and employment in what was from their perspective a new job market: the post-Ebola expansion of research and health care systems. This paper analyses participation in contemporary research by viewing the context-specific histories of trial participants through the lens of prior interventions, specifically participatory reintegration programmes conducted in Anglophone West Africa to overcome civil war crises. In particular, we argue that participation in the Ebola vaccine trial was inadvertently shaped by the design and outcomes of past reintegration programmes. Our results highlight the need to investigate existing socioeconomic landscapes which surround and indeed permeate clinical research as a prerequisite for understanding the participatory motives of vulnerable participants in West Africa and elsewhere.

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