title: Trouble in the gap: a bioethical and sociological analysis of informed consent for high-risk medical procedures.
abstract: 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.
authors.affiliation: Centre for Values, Ethics and the Law in Medicine, The University of Sydney, Level 1, Building 1, Medical Foundation Building (K25), Sydney, NSW 2006, Australia. chris.jordens@sydney.edu.au
authors.forename: Christopher F C
authors.initials: CF
authors.lastname: Jordens
authors.forename: Kathleen
authors.initials: K
authors.lastname: Montgomery
authors.forename: Rowena
authors.initials: R
authors.lastname: Forsyth
mesh_terms: D016026:Bone Marrow Transplantation / Q000941:ethics*; D006801:Humans; D007258:Informed Consent / Q000941:ethics*; D033262:Narration; D009517:New South Wales; D010353:Patient Education as Topic / Q000941:ethics*; D024382:Professional Role; D011369:Professional-Patient Relations / Q000941:ethics*; D036301:Qualitative Research; D012803:Sick Role