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In:Risk Discourse and Responsibility
Edited by Annelie Ädel and Jan-Ola Östman
[Pragmatics & Beyond New Series 336] 2023
► pp. 88–116

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Chapter 4
Shouldering responsibility

An autoethnographic perspective on informed consent and exoneration in a clinical trial

 | Durham University, UK
Published online: 24 July 2023
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https://doi.org/10.1075/pbns.336.04gru
Abstract
This chapter explores my experience as a participant in the Covid-19 Oxford vaccine trial and particularly the contrapuntal relationship between the naïve event diary I kept and my increasingly careful reading of the Participant Information Sheet (PIS). Adopting an autoethnographic approach, I describe the gradual process by which I came to realize how naively I had understood my role and how I then applied a pragmatic framework in re-evaluating the PIS as an exercise in exoneration and the transfer of responsibility from the investigator to the participant. While the PIS focuses on enumerating risks without considering the false negative possibility that the trial might be successful and yet still fail to identify a serious risk, my event diary shows how a volunteer’s sense of participant integrity is undermined when this risk that dare not speak its name actually occurs.
Article outline
  • 1.Background
    • 1.1Timelines
    • 1.2Responsibility
  • 2.Method
  • 3.Data
    • 3.1The participant information sheet
    • 3.2The trial participant diary
  • 4.Shouldering responsibility: Informed consent and exoneration
    • 4.1Accounts and responsibility
    • 4.2Self-reflexivity
    • 4.3Inclusion
      • 4.3.1Lay and professional descriptions: Glossing
      • 4.3.2Lay and professional register
    • 4.4Controlling inference
    • 4.5Authorial voices and metapragmatic awareness
  • 5.Conclusion
    • 5.1Risk and responsibility
    • 5.2The study
  • Acknowledgements
  • Notes
  • References
References (18)
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