Beyond the 'therapeutic misconception': Research, care and moral friction

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, health care and research are depicted as serving distinct goals, and policies are in place to prevent what is seen as patients' misconceived understanding of research as health care. On the basis of ethnographic research in four Danish hospitals in conjunction with a cardiovascular drug trial in patients with chronic disease, we argue that the objectives of health care and research often merge in mutually constitutive practices. We build on observations of trial activities, interviews with physician-investigators, research nurses, patient-participants and trial sponsors and a survey of the patient-participants. We found an organization of clinical drug trials allowing extraordinary care relationships to form, which makes trial participation attractive for patients 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 four situations in which friction arises: when care-giving comes to replace specialist contact, when caring for individuals appears unfair for the collective, when care motives may be doubted and when patients invent their own ways of helping staff in order to reciprocate their care. 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, health care and research are depicted as serving distinct goals, and policies are in place to prevent what is seen as patients' misconceived understanding of research as health care. On the basis of ethnographic research in four Danish hospitals in conjunction with a cardiovascular drug trial in patients with chronic disease, we argue that the objectives of health care and research often merge in mutually constitutive practices. We build on observations of trial activities, interviews with physician-investigators, research nurses, patient-participants and trial sponsors and a survey of the patient-participants. We found an organization of clinical drug trials allowing extraordinary care relationships to form, which makes trial participation attractive for patients 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 four situations in which friction arises: when care-giving comes to replace specialist contact, when caring for individuals appears unfair for the collective, when care motives may be doubted and when patients invent their own ways of helping staff in order to reciprocate their care. 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

SN - 1745-8552

VL - 9

SP - 3

EP - 23

JO - BioSocieties

JF - BioSocieties

IS - 1

ER -