TY - JOUR

T1 - Beyond the 'therapeutic misconception'

T2 - Research, care and moral friction

AU - Wadmann, Sarah

AU - Hoeyer, Klaus

PY - 2014/3

Y1 - 2014/3

N2 - In research ethics regulation, healthcare and research are depicted as serving ideally distinct goalspractices tainted by mixing, and policies are in place to prevent what is seen as patients’ misconceived understanding of research as healthcare. Based on ethnographic research in four Danish hospitals in conjunction with a cardiovascular drug trial in patients with chronic disease, we argue that the objectives of healthcare and research often merge in mutually constitutive practices. We build on observation, interviews with physician-investigators, project nurseresearch nurses, patient-participants and trial sponsors, and a survey of the participants. We found an organisation of clinical drug trials allowing extraordinary care relationships to form which makes trial participation attractive and allows information to flow more freely. However, the research-care intermingling generates moral concerns for those involved. We conceptualize these concerns as a productive moral friction resulting from research staff caring too much for patients. We identify three situations in which friction arises: when care-giving comes to replace specialist contact, when caring for individuals appears unfair for the collective, and when care motives may be doubted. We conclude that the presentation of the research-care tension as an ethical dilemma is misleading and even part of the problem that must be dealt with by those involved.

AB - In research ethics regulation, healthcare and research are depicted as serving ideally distinct goalspractices tainted by mixing, and policies are in place to prevent what is seen as patients’ misconceived understanding of research as healthcare. Based on ethnographic research in four Danish hospitals in conjunction with a cardiovascular drug trial in patients with chronic disease, we argue that the objectives of healthcare and research often merge in mutually constitutive practices. We build on observation, interviews with physician-investigators, project nurseresearch nurses, patient-participants and trial sponsors, and a survey of the participants. We found an organisation of clinical drug trials allowing extraordinary care relationships to form which makes trial participation attractive and allows information to flow more freely. However, the research-care intermingling generates moral concerns for those involved. We conceptualize these concerns as a productive moral friction resulting from research staff caring too much for patients. We identify three situations in which friction arises: when care-giving comes to replace specialist contact, when caring for individuals appears unfair for the collective, and when care motives may be doubted. We conclude that the presentation of the research-care tension as an ethical dilemma is misleading and even part of the problem that must be dealt with by those involved.

KW - Faculty of Health and Medical Sciences

KW - Ancillary care

KW - care

KW - clinical drug trials

KW - friction

KW - research ethics

KW - therapeutic misconception

KW - ethics regulation

U2 - 10.1057/biosoc.2013.37

DO - 10.1057/biosoc.2013.37

M3 - Journal article

VL - 9

SP - 3

EP - 23

JO - BioSocieties

JF - BioSocieties

SN - 1745-8552

IS - 1

ER -