Journal of Medicine and Philosophy 43 (1):83-114 (2018)
Abstract |
Phase 1 healthy volunteer clinical trials—which financially compensate subjects in tests of drug toxicity levels and side effects—appear to place pressure on each joint of the moral framework justifying research. In this article, we review concerns about phase 1 trials as they have been framed in the bioethics literature, including undue inducement and coercion, unjust exploitation, and worries about compromised data validity. We then revisit these concerns in light of the lived experiences of serial participants who are income-dependent on phase 1 trials. We show how participant experiences shift attention from discrete exchanges, behaviors, and events in the research enterprise to the ongoing and dynamic patterns of serial participation in which individual decision-making is embedded in collective social and economic conditions and shaped by institutional policies. We argue in particular for the ethical significance of structurally diminished voluntariness, routine powerlessness in setting the terms of exchange, and incentive structures that may promote pharmaceutical interests but encourage phase 1 healthy volunteers to skirt important rules.
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DOI | 10.1093/jmp/jhx033 |
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References found in this work BETA
Theory Construction in Qualitative Research.Stefan Timmermans & Iddo Tavory - 2012 - Sociological Theory 30 (3):167-186.
Rethinking the Ethics of Clinical Research: Widening the Lens.Alan Wertheimer - 2010 - Oxford University Press.
View all 37 references / Add more references
Citations of this work BETA
“Paid to Endure”: Paid Research Participation, Passivity, and the Goods of Work.Erik Malmqvist - 2019 - American Journal of Bioethics 19 (9):11-20.
The Continued Complexities of Paying Research Participants.Christine Grady - 2019 - American Journal of Bioethics 19 (9):5-7.
Paying for Fairness? Incentives and Fair Subject Selection.Douglas MacKay & Rebecca L. Walker - 2021 - American Journal of Bioethics 21 (3):35-37.
Precarity, Clinical Labour and Graduation From Ebola Clinical Research in West Africa.Arsenii Alenichev & Vinh-Kim Nguyen - 2019 - Global Bioethics 30 (1):1-18.
Bridging the Gap Between Theory and Practice: Philosophy Through a Wide-Angle Lens.Janet Malek - 2018 - Journal of Medicine and Philosophy 43 (1):1-7.
View all 7 citations / Add more citations
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