Agency and communication challenges in discussions of informed consent in pediatric cancer research.
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.
Department of Communication, 143 Theatre and Communication, University of Memphis, Memphis, TN 38152, USA. ajyoung@memphis.edu
Amanda J
AJ
Young
Loel
L
Kim
Shu Li
Justin N
JN
Baker
Michael
M
Schmidt
Jonathan W
JW
Camp
Raymond C
RC
Barfield
D000293:Adolescent; D003142:Communication; D003657:Decision Making; D005260:Female; D017144:Focus Groups; D006801:Humans; D007258:Informed Consent; D008297:Male; D009369:Neoplasms; D009723:Nurse-Patient Relations; D010372:Pediatrics; D010817:Physician-Patient Relations; D012106:Research; D013714:Tennessee