Agency and communication challenges in discussions of informed consent in pediatric cancer research.


Journal Article

In this article we examine the discourse of four focus groups we conducted at a pediatric research hospital in which we queried teenage patients, parents, nurses, and physicians about their perceptions of the informed consent process in research. Autonomy, as the goal of informed consent, is a murky concept, with some ethicists questioning the possibility that it can ever be attained. We argue that it might be more productive to consider agency, which we define as language and action that are constructed, negotiated, and maintained through effective communication. Our goal was to understand how individuals rhetorically constructed agency in discussions of informed consent experiences. After transcribing and coding the focus group interviews, we identified six aspects of agency in participants' discourse: (a) defining roles, (b) seeking information, (c) providing information, (d) supporting others, (e) making decisions, and (f) claiming agency for self. Examining these aspects of agency indicated that efforts to improve the informed consent process must address: (a) status differentials, (b) role definitions, (c) information flow, and (d) relationships.

Full Text

Cited Authors

  • Young, AJ; Kim, L; Shu Li, ; Baker, JN; Schmidt, M; Camp, JW; Barfield, RC

Published Date

  • May 2010

Published In

Volume / Issue

  • 20 / 5

Start / End Page

  • 628 - 643

PubMed ID

  • 20154295

Pubmed Central ID

  • 20154295

International Standard Serial Number (ISSN)

  • 1049-7323

Digital Object Identifier (DOI)

  • 10.1177/1049732310361467


  • eng