Trouble in the Gap: A Bioethical and Sociological Analysis of Informed Consent for High-Risk Medical Procedures
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Concerns are frequently raised about the extent to which formal consent procedures actually lead to “informed” consent. As part of a study of consent to high-risk medical procedures, we analyzed in-depth interviews with 16 health care professionals working in bone-marrow transplantation in Sydney, Australia. We find that these professionals recognize and act on their responsibility to inform and educate patients and that they expect patients to reciprocate these efforts by demonstrably engaging in the education process. This expectation is largely implicit, however, and when it is not met, this can give rise to trouble that can have adverse consequences for patients, physicians, and relationships within the clinic. We revisit the concept of the sick role to formalize this new role expectation, and we argue that “informed” consent is a process that is usually incomplete, despite trappings and assumptions that help to create the illusion of completeness.
KeywordsInformed consent Sick role Bioethics Sociology, medical Bone marrow transplantation Qualitative research Australia
We are very grateful to the interviewees, who gave generously of their time to participate. We also acknowledge with thanks the important contributions of Camilla Scanlan, Ian Kerridge, Cameron Stewart, and Stacy Carter. Amalya Oliver, Wendy Lipworth, and the JBI’s handling editor for this article, Rob Irvine, offered valuable comments that helped to improve the paper.
Statement of Competing Interests
No competing interests to declare.
Details of Funding Support
The authors disclose receipt of the following financial support for the research and/or authorship of this article: the National Health and Medical Research Council (NHMRC, project no. 457439) and the University of California Academic Senate. Kathleen Montgomery’s contribution to the study was supported by the University of California Academic Senate.
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