Accounts of consent: Orienting to self-other relations regarding motivations to participate in cancer bio-banking

Authors

  • Hannah Shipman East Anglian Medical Genetics Service
  • Srikant Sarangi Aalborg University
  • Angus J. Clarke Cardiff University

DOI:

https://doi.org/10.1558/cam.v11i1.17324

Keywords:

consent, account, cancer bio-banking, discourse, self-other dynamics, ethics-in-interaction

Abstract

The motivations of those who give consent to bio-banking research have received a great deal of attention in recent years. Previous work draws upon the notion of altruism, though the self and/or family have been proposed as significant factors. Drawing on 11 interviews with staff responsible for seeking consent to cancer bio-banking and 13 observations of staff asking people to consent in routine clinical encounters, we investigate how potential participants are oriented to, and constructed as oriented to, self and other related concerns (Author 2007). We adopt a rhetorical discourse analytic approach to the data and our perspective can be labelled as ‘ethics-in-interaction’. Using analytic concepts such as repetition, extreme case formulation, typical case formulation and contrast structure, our observations are three-fold. Firstly, we demonstrate that orientation to ‘general others’ in altruistic accounts and to ‘self’ in minimising burden are foregrounded in constructions of motivation to participate in cancer bio-banking across the data corpus. Secondly, we identify complex relational accounts which involve the self as being more prominent in the consent encounter data where the staff have a nursing background whereas ‘general others’ feature more when the staff have a scientific background. Finally, we suggest implications based on the disparities between how participants are oriented in interviews and consent encounters which may have relevance for developing staff’s reflective practice.

Author Biographies

  • Hannah Shipman, East Anglian Medical Genetics Service
    Hannah Shipman is a genetic counsellor at the East Anglian Medical Genetics Service in Cambridge. She obtained her PhD from Cardiff University on the topic ‘Constructions of Consent: Accounts of Tumour Testing in Clinical Practice and Bio banking for Research Purposes’. Her research interests are in the ethics of genetic and genomic testing, the discourse of healthcare encounters and patient experiences.
  • Srikant Sarangi, Aalborg University
    Srikant Sarangi is currently Professor in Humanities and Medicine and Director of the Danish Institute of Humanities and Medicine (DIHM) at Aalborg University. He is also Honorary Professor at Cardiff University. His research interests are in institutional/ professional discourse studies (e.g. healthcare, social work, bureaucracy, education) and applied linguistics. He is author and editor of twelve books, guest-editor of five journal special issues and has published nearly two hundred journal articles and book chapters.
  • Angus J. Clarke, Cardiff University
    Angus J. Clarke studied genetics and then medicine as an undergraduate, then trained in general medicine, paediatrics and clinical genetics. He is Professor and Consultant in Clinical Genetics at Cardiff University and has research interests in Rett syndrome, ectodermal dysplasia and the ethical, social and communication aspects of human genetics. He engages with the development of policy around these topics through work for the Chief Medical Officer, Wales and the British Society for Genetic Medicine.

Published

2015-03-16

Issue

Section

Articles

How to Cite

Shipman, H., Sarangi, S., & Clarke, A. J. (2015). Accounts of consent: Orienting to self-other relations regarding motivations to participate in cancer bio-banking. Communication and Medicine, 11(1), 69-84. https://doi.org/10.1558/cam.v11i1.17324

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