The "mild-torture economy": exploring the world of professional research subjects and its ethical implications

Abadie, Roberto

doi:10.1590/s0103-73312015000300003

Cited by 6 publications

(7 citation statements)

References 7 publications

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“…As a result, numerous West Africans were put in positions of seeking new opportunities for financial survival for themselves and their families. In this sense, our findings align with those of Abadie (2015) who described the process of participation in clinical research in the US as an opportunity to temporarily or permanently overcome precarity, leading to “professionalisation” of research subjects. What remains a core question for research ethics is whether or not participation in clinical research should be regulated as a form of labour, as is suggested by pragmatic bioethicists (Cooper & Waldby, 2014; Parry, 2015).…”

Section: Discussionsupporting

confidence: 89%

Precarity, clinical labour and graduation from Ebola clinical research in West Africa

Alenichev

Nguyen

2019

Global Bioethics

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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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Section: Discussionsupporting

confidence: 89%

Precarity, clinical labour and graduation from Ebola clinical research in West Africa

Alenichev

Nguyen

2019

Global Bioethics

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“…The paper deals with the widespread practice of paying research participants in exchange for their valuable service without determining whether the service should be treated as an unskilled labor, “regular” work, body renting, or a unique sui generis endeavor (cf. Lemmens and Elliott 1999 , 2001 ; King Reame 2001 ; Anderson and Weijer 2002 ; Elliott 2008 ; Abadie 2015 ; Phillips 2011b ; Lynch 2014 ; Różyńska 2018 ). For the sake of the analysis to come, it is assumed that paid participation in biomedical research is a form of paid bodily services, and it should be “no more worrisome to commodify a person’s labor [bodily service— JR ] as a research subject than to commodify a person’s labor in other contexts, which happens all the time” (Lynch 2014 , p. 159).…”

Section: Preliminary Terminological Remarksmentioning

confidence: 99%

“…For the sake of the analysis to come, it is assumed that paid participation in biomedical research is a form of paid bodily services, and it should be “no more worrisome to commodify a person’s labor [bodily service— JR ] as a research subject than to commodify a person’s labor in other contexts, which happens all the time” (Lynch 2014 , p. 159). Therefore, commodification concerns against research payment, raised by some commentators (Macklin 1989 ; Chambers 2001 ; Abadie 2010 , 2015 ; Cooper and Waldby 2014 ; Walker and Fisher 2019 ) will not be explored here.…”

Section: Preliminary Terminological Remarksmentioning

confidence: 99%

The ethical anatomy of payment for research participants

Różyńska

2022

Med Health Care and Philos

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In contrast to most publications on the ethics of paying research subjects, which start by identifying and analyzing major ethical concerns raised by the practice (in particular, risks of undue inducement and exploitation) and end with a set of—more or less well-justified—ethical recommendations for using payment schemes immune to these problems, this paper offers a systematic, principle-based ethical analysis of the practice. It argues that researchers have a prima facie moral obligation to offer payment to research subjects, which stems from the principle of social beneficence. This principle constitutes an ethical “spine” of the practice. Other ethical principles of research ethics (respect for autonomy, individual beneficence, and justice/fairness) make up an ethical “skeleton” of morally sound payment schemes by providing additional moral reasons for offering participants (1) recompense for reasonable expenses; and (2a) remuneration conceptualized as a reward for their valuable contribution, provided (i) it meets standards of equality, adequacy and non-exploitation, and (ii) it is not overly attractive (i.e., it does not constitute undue inducement for participation or retention, and does not encourage deceptive behaviors); or (2b) remuneration conceptualized as a market-driven price, provided (i) it is necessary and designed to help the study achieve its social and scientific goals, (ii) it does not reinforce wider social injustices and inequalities; (iii) it meets the requirement of non-exploitation; and (iv) it is not overly attractive. The principle of justice provides a strong ethical reason for not offering recompenses for lost wages (or loss of other reasonably expected profits).

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“…The graduation certificate materialized the quasiprofessional status of trial participants. Participants' contributions to the trial could be characterized as 'clinical labor', that is, as one of the many forms of labor that exist globally without labor protection (Abadie 2015;Cooper and Waldby 2014;Parry 2015). At the same time, graduation from the trial was also an intensely local experience that closely resembled the graduation ceremonies that occurred after post-civil war reintegration programs.…”

Section: A Wall Separating Monrovia and The Pacific Ocean Featuring mentioning

confidence: 99%

In the shadow of tomorrow

Alenichev¹

2018

MAT

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This photo essay draws on images taken by the author in Liberia between August and December 2016, as part of an anthropological project exploring the perspectives of participants involved in Ebola vaccine research at the peak of the outbreak. In 2014, a US-Liberian collaboration resulted in the launch of Liberia's first large-scale randomized Ebola vaccine clinical trial. Fifteen hundred people were rapidly recruited to participate in the trial and subsequently found to have compliance rates of 98 percent, an achievement that researchers had previously thought unimaginable.

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The "mild-torture economy": exploring the world of professional research subjects and its ethical implications

Abstract: This paper documents the emergence of the subject of professional research in Phase

Cited by 6 publications

References 7 publications

Precarity, clinical labour and graduation from Ebola clinical research in West Africa

Precarity, clinical labour and graduation from Ebola clinical research in West Africa

The ethical anatomy of payment for research participants

In the shadow of tomorrow

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