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- Convenors:
-
Eileen Moyer
(University of Amsterdam)
Eva Vernooij (Utrecht University)
- Discussant:
-
Vinh-kim Nguyen
- Location:
- JUB-118
- Start time:
- 9 September, 2015 at
Time zone: Europe/London
- Session slots:
- 1
Short Abstract:
The past decade has seen increasing involvement of anthropologists in experimental designs in HIV research to inform interventions and designs trials, and in undertaking critical ethnographies of 'trial communities'. This panel aims to discuss experiences and ways forward in ethnographic theory.
Long Abstract:
Over the last twenty-five years, anthropology has provided important critical examinations of HIV-related experimental science. Anthropologists have explicated the hidden cultural transcripts and unintentional social 'side effects' of experimental practice; raised ethical concerns related to recruitment, consent, and confidentiality in cross-cultural contexts; questioned the growing commercialization of both experimentation science and study populations; as well as the power relations embedded in experimentation practices carried out among the economically and politically marginalized. Whereas much early ethnographic research on experimental AIDS science was conducted from 'outside', the past decade has seen increasing involvement of anthropologists in experimental designs in HIV research, executing preliminary qualitative explorations to inform interventions, instruments or designs of trials; conducting field studies and observational studies parallel to trials to, for example, increase external validity; and undertaking critical ethnographies of 'trial communities'. This panel aims to bring together anthropologists and other sympathetic ethnographic researchers who participate in collaborative HIV/AIDS research to discuss experiences—chances, problems, obstacles and dilemmas—and ways forward in ethnographic theory. From a theoretical perspective, we ask how anthropological research carried out in and on HIV/AIDS interventions and trials might engage with and contribute to wider debates in the anthropology of trials, the anthropology of collaborative research, and the sociological study of science more generally.
Accepted papers:
Session 1Paper short abstract:
This paper will discuss the concept of real-world research by examining conflicting perspectives about the ‘standard-of-care’ in an implementation study evaluating the effectiveness of offering antiretroviral treatment as prevention in a government-managed health system in Swaziland.
Paper long abstract:
The goal of the Early Access to ART for All implementation study is to evaluate the effectiveness of offering antiretroviral treatment for prevention in a government-managed health system in Swaziland. The study is being implemented in 14 rural health facilities which is expected to provide evidence of implementation challenges in the "real-world". But in order to measure changes between the control and intervention phase, the participating facilities have to enact the study protocol in the same way. This results in an ambiguous balance between standardizing practices in order to increase comparability and not intervening because of the principle of real-world implementation.
This paper will discuss the concept of real-world research by analyzing conflicting perspectives of study team members about the notion of the 'standard-of-care', what that is, or ought to be, when doing implementation research. In doing so I will explore how diverging notions of standards of care relate to study team members' expectations of what the study aims to achieve, for themselves, for the population of Swaziland and for the scientific community.
The analysis draws on experiences of being involved as the social science coordinator within the study team over a period of three years, of which twelve months consisted of ethnographic fieldwork carried out in Swaziland between February 2014 and February 2015. I attended over 40 team meetings, and conducted 10 interviews with study staff members and 10 interviews with health providers of study facilities, in addition to doing participant observation in one of the participating health facilities.
Paper short abstract:
There are lessons to be learned from anthropological involvement in clinical and community-based trials that contribute to both anthropological knowledge and ethical conduct of trials
Paper long abstract:
In the last decade there has been a more prominent involvement of anthropologists in intervention trials, particularly HIV prevention trials. With the recent Ebola Virus Disease (EVD) epidemic there has also been a strong argument for the involvement of anthropologists in EVD prevention and treatment trials. Drawing on my anthropological work in a microbicide trial, an EVD vaccine trial, and a community-based trial testing interventions to prevent gender-based violence (GBV), I will discuss both the challenges and the possibilities that emerge from this role. This includes discussions about ethical conduct of trials, broader ethical issues surrounding trials including rumours, materiality, social relations and also on understanding local socio-economic realities. I will also discuss how an anthropological lens on HIV and GBV trials which aim to "empower' women (whether technologically, socially or economically) can contribute to wider anthropological debates about gender and power.
Paper short abstract:
This rather unorthodox paper is a conversation with an epidemiologist who was the director of HIV Research for a large state run clinical research centre in Kenya and a co-investigator on a collaborative ethnographic project exploring medical field studies, or ‘trial communities,’ in western Kenya.
Paper long abstract:
This rather unorthodox paper is a conversation between an anthropologist and an epidemiologist who was the director of HIV Research for a large state run clinical research centre in Kenya and a co-investigator on a collaborative ethnographic project exploring medical field studies, or 'trial communities,' in western Kenya. The large-scale collaborative ethnography was a study of a collaborative medical research centre in western Kenya involving multiple partners from Kenya and the USA. Thus, at the centre of this conversation is a question about the pragmatics of what 'collaboration' represents in different disciplines and how it is enacted. The dialogue, a post-research follow up interview, highlights the expectations and tensions in such collaborative projects and offers the epidemiologist an opportunity to highlight the ideas, methods, and possibilities that he perceived as being 'lost in translation' between socio-cultural anthropology and experimental medicine. He raises critical issues regarding the disjuncture between epidemiological and anthropological practices in research design, methods, epistemology, and collaboration, and speaks about his disillusionment with the overall experience of working with anthropologists. The paper works as an interrogation into collaborative practices and conceptual interdisciplinarity, and raises questions regarding the ethics, politics, and practicalities of studying experimental medicine as collaboration. The conversation is contextualized within my own 15-year history of fieldwork on collaborative ethnographic projects in HIV/AIDS science and debates and discussions with collaborators on these projects.