The many meanings of care in clinical research

Easter, Michele M., Henderson, Gail E., Davis, Arlene M., Churchill, Larry R., & King, Nancy M. P. (2006) The many meanings of care in clinical research. Sociology of Health & Illness, 28(6), pp. 695-712.

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The conduct of clinical research often involves two distinguishable sets of relationships: the researcher-subject relationship, and the clinician-patient relationship. Some scholars argue that being a patient in a clinical care setting and a subject in a research study are so different that anything that would promote in subjects the view that they are in clinician-patient relationships is exploitative and deceptive. This paper presents findings intended to initiate a more empirically-based discussion of this issue. Using data from 82 in-depth interviews with physician-investigators, nurse-study coordinators and patient-subjects in early phase clinical trials, we find that research personnel are likely to be seen, and to see themselves, as clinical caregivers. We also find evidence that while researchers and subjects often tend to view care and research as conflicting activities, both parties tend to see research as a way of caring for patients. We found no relationship, however, between subjects' perception of care-giving by researchers and the tendency to misunderstand that they are in a research study. Because research, by necessity and inclination, is unlikely ever to be 'care-free', we recommend that the ethical debate surrounding the danger of confusing research with treatment take into account the kinds of care described by respondents.

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39 citations in Scopus
31 citations in Web of Science®
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ID Code: 9970
Item Type: Journal Article
Refereed: Yes
Keywords: research ethics, care, clinical research, role conflict, gene transfer gene, transfer trials, therapeutic misconception, informed consent, investigator, scientists, bioethics, tension, trust
DOI: 10.1111/j.1467-9566.2006.00537.x
ISSN: 01419889
Subjects: Australian and New Zealand Standard Research Classification > MEDICAL AND HEALTH SCIENCES (110000) > OTHER MEDICAL AND HEALTH SCIENCES (119900) > Medical and Health Sciences not elsewhere classified (119999)
Divisions: Past > Research Centres > Centre for Health Research
Current > QUT Faculties and Divisions > Faculty of Health
Current > Institutes > Institute of Health and Biomedical Innovation
Copyright Owner: Copyright 2006 Blackwell
Copyright Statement: The definitive version is available at
Deposited On: 08 Oct 2007 00:00
Last Modified: 09 Jun 2010 12:47

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