The excerpt above exemplifies how one informant, also an ex-combatant, compared his experience in trial participation with the past civil war conflict. In doing so, he made a parallel between the ways in which civil war generals used child soldiers as a form of disposable power, and the ways in which researchers approach trial participants.
After graduation, numerous participants described a return to unemployment with the additional burden of the stigma of having been a research participant. Informants also described disillusionment with research, characterised in terms of broken promises and missing items and benefits. For instance, participants expressed concerns that they had missed the opportunity to go to the USA for networking purposes:.
And they lied to us and betray us. They said they were going to carry us to Washington DC. For informants, the injustice lay in the fact that they were the ones who took a biomedical and societal risk associated with the trial, but unlike researchers, trackers and security guards, they were not entitled to post-graduation benefits. Informants subsequently reported that their trust in researchers declined alongside the research timeline as they realised their initial expectations would not materialise:.
Informants stressed the inequality between different trial stakeholders, and the fact that clinical research in Africa is generally a less lucrative activity than when undertaken in the West. Many believed that the vaccine would be sold on the global market, bringing more benefits to researchers and other stakeholders.
In the quote below, an informant expressed a deep frustration with the whole process:. They ate our money. The people who did not take [the vaccine] where the ones who benefited. They brought the vaccine and if their vaccine is real they will put it on the global market. We know this. Significantly, results from this study show how responses to precarity emerged as a key motif in the narratives of informants about their voluntary participation in an Ebola vaccine trial in West Africa.
The trial, the first large randomised clinical trial in the country, was able to provide support to participants that would otherwise have been unavailable. Making a virtue of dire necessity, the participation of volunteers in research had a dynamic survivalist character, with a simultaneous presence of factors influencing autonomy and heteronomy. As such, the process of voluntary decision-making was largely affected by macro-level factors, which embedded benefit provision in the context of constrained health, social and economic opportunities.
In accordance with clinical research practices, social support in the form of payments, better access to health care and food packages ended after the graduation once the active phase of the trial was over, generating dissatisfaction amongst the graduates. Top-down power dynamics between trackers, security guards, and informants shaped frustration and disappointment following graduation practices. Our findings concur with previous ethnographic studies that show how normative styles of ethical reasoning risk misrepresenting motives to participate as altruism, masking internal frictions, tensions and considerations.
This suggests that pragmatic considerations should inform policy and practice in global health research, as idealist justifications fail to capture pragmatic complexities which participants have to routinely overcome. Ethical variability implies that the contexts in which a clinical trial is carried affect how research is locally perceived and carried out.
An important analytic insight is that the experiences and perceptions of trial subjects might be linked to other processes that operate within similar social and historical contexts. A question thus emerges: what is the contextual meaning of a graduation from an intervention such as Ebola trial? When Ebola struck, memories of civil war and, significantly, post-war reintegration and reconstruction programmes were still vivid in Liberia and Sierra Leone.
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Despite the diversity of reintegration programmes, they shared a goal of establishing a socioeconomic mechanism for intended beneficiaries to get stable employment and income through participation in organised activities. Data collected further suggests striking similarities between reintegration programmes and Ebola vaccine research in how participants understood the purpose of study ID cards.
Moreover, common to both reintegration programmes and Ebola vaccine research were pre-participatory aspirations of participants; ongoing, temporary social protection during participation; and unmet expectations after graduation, which appeared in stark contrast with the perceived wealth and power absorbed by the implementers Kilroy, This parallel reflects a historical reality: numerous contemporary projects on socioeconomic and political development directly and indirectly absorbed the infrastructure of reintegration programmes.
Our data suggests that contemporary Ebola trials were influenced by the legacy of these prior participatory interventions that addressed rather different kinds of problems. Similar to reintegration programmes, clinical research generated hopes of employment after participation.
Likewise, a graduation certificate was perceived to give an advantage when entering a new job market in the assumed post-Ebola expansion of the health care systems. When similar practices are used by different programmes and institutions to different ends, their more recent iteration is often interpreted in light of prior experiences and discourses; older meanings persist, constituting a form of symbolic misattribution. Can participation in interventions such as reintegration programmes or clinical research be conceptualised as labour for obtaining valued health, social, and economic benefits?
And, if so, how would this affect research ethics in practice and in theory? The understanding of labour is often represented in popular discourse as a morally positive activity combining wage economy, formal contracts, and a fixed workplace. However, in the era of flexible accumulation, labour markets are being fundamentally restructured, promoting precarious work regimes in a less regulated fashion Harvey, Labour in many African contexts escapes a dogmatic coupling with the process of production, consisting of attempts to secure transfers of benefits from those who have them, to those who do not Ferguson, In recent discussions, emerging forms of flexible labour are seen as evidence of a new globally emerging class of workers — the precariat, distinctively known to suffer from a lack of professional connections, insecurities about the future, and an absence of social protection and stable income Standing, By navigating between a large unemployment pool and limited employment options, the precariat becomes a disposable and readily-available force in proliferating labour markets in the Global South Munck, ; Scully, As a result, numerous West Africans were put in positions of seeking new opportunities for financial survival for themselves and their families.
At this point, it is essential to note that the strength of contractualisation depends on the existence of a well-organised regulatory system and its availability to protect contract workers. This is unlikely in West Africa, where state capacity is limited and extreme poverty is widespread.tacoddaso.ml
Explaining the Regional Heterogeneity of Poverty: Evidence from Decentralized Indonesia.
Formal unemployment varies from country to country and remains generally high among youth. From an anthropological perspective, Geissler warned that an analytically convincing idea of contractualisation of research participation risks generating economic reductionism by labelling all participatory reasons as employment. In light of this debate, data from this study suggests that contractualisation of trial participation may provide a temporary reprieve, yet how much does this really change the structural conditions that promote precarity among a sizeable proportion of the population?
These site-specific accounts documented views of marginalised participants in shortly after Graduation, and these may have subsequently changed. A potential bias of this study is that the opportunity it provided participants to discuss problems with their research participation allowed painful individual experiences, as well as chronic societal forms of suffering, to be expressed. Such perceptions and do not necessarily represent the voices of other participants in this and other Ebola clinical trials in West Africa.
In these settings, research teams strove to deliver the trial and protect the voluntary decision-making of participants by implementing good research practices and international guidelines. Simultaneously, trial volunteers approached participation as a rare health care and socioeconomic opportunity to be affiliated with powerful structures which would otherwise remain inaccessible. Sharp narratives of deep dissatisfaction among graduated participants were fuelled by perceptions of internal corruption, and reflected systematic inequalities and the overall failure of reintegration programmes.
Despite adhering to ethical safeguards, prevailing forms of vulnerability at times meant trial participation could exacerbate and mitigate the vulnerability. Similarities in design, perceptions and expectations between reintegration programmes DDR and RRR and the participatory component of Ebola clinical research suggest that addressing local context includes the history of prior interventions which can shape perceptions and expectations. Due to the fact that the protection of human subjects remains the key priority for international research ethics, there is a great need to organise new forms of collective action and representation for participants approaching participation in interventions as a form of employment to meet basic needs in precarious settings.
Can you please tell me a bit about yourself and what happened to you during the Ebola outbreak? What did the researchers tell you about the risks and benefits of your participation?
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Did you know that your participation might bring stigma before you consented to participate? Have you heard about it? We thank the Ebola research community mobilisation and engagement teams in West Africa which made this research possible. We would also like to show our gratitude to colleagues and peer reviewers for their comments, insights and suggestions.
We are also immensely grateful to informants and local assistants for their cooperation and support. National Center for Biotechnology Information , U. Journal List Glob Bioeth v. Glob Bioeth. Published online Jan Author information Article notes Copyright and License information Disclaimer. Received Jun 18; Accepted Jan 4. Materials and methods The trial In , a phase II double-blinded placebo-controlled trial investigated the effects of two experimental Ebola vaccines against placebo in one of the countries in West Africa.
The study This study is a qualitative single-site exploration of motivations, perceptions and experiences of volunteers who finished participation in this trial. Roles of authors Author A, is a trained bioethicist and a PhD student at [University] who is not affiliated with trial organisers and community mobilisation teams.
Informants and data collection Author A collected data over three months of fieldwork in areas which hosted the trial October —December Results Five main themes which emerged from the discussions with informants about participation: hope for support, importance of payments, problems with follow-up, Graduation and ID cards, and unfulfilled expectations. FGD 5 Informants stated that they voluntarily accepted to participate because Ebola vaccines generated hopes of protection from the disease, they would be getting quick money to satisfy immediate needs, and because they were promised that their lifestyle would improve in the longer term.
The following quote exemplifies the importance of the workshop as a study platform provided by the research teams: Interviewer: how was Ebola research introduced to your community? FGD1 As numerous informants lived with limited access to food, packages of food during the workshop were of great significance for informants, as the following quote exemplifies: Before you attend the workshop, they shared a package, in it there was biscuit and other snacks and they usher us in ten at a time.
Reprint of: Food security and violent conflict: Introduction to the special issue - ScienceDirect
Interview 3 Informants reported that they were provided with identity cards. One informant further explained the process: Interviewer: Can you tell me about the workshop? FGD 2 In the context of widespread unemployment, lack of formal education and lack of socioeconomic opportunities, expectations of long-lasting collaboration and prospects of future benefits were key reasons cited for participation, despite stigma against informants: [Researchers] just told us that the USD 40 was just a little compensation but we had a better future ahead of us after the programme that we will tell our friends that hated us that we participated, and we are happy.
The role of payments At that time, it was like war fighting. FGD 2 One informant showed the consent form version 1. Informants stated that the details about payment, such as frequency and values, were given verbally by the research staff, as this informant further explains: In the workshop they explain and they told us how much we were going to be receiving for the vaccine.
Interview 1 Informants consistently reported the following payment scheme: USD 20—40 for a vaccination visit and USD 10 for a follow-up visit. Interview 8 Informants used these payments for purposes such as buying goods, investing in microbusinesses, paying school fees, or fixing up rooms. In some cases, payments in research were the only income people had, and at least one informant participated not knowing about the purpose of the vaccine: Interviewer: Can you please tell me why you decided to participate in the trial?