Distinguishing research from clinical care in cancer genetics: theoretical justifications and practical strategies
Distinguishing research from clinical care in cancer genetics: theoretical justifications and practical strategies
The relationship between clinical research and clinical care is often perceived as unclear, particularly in highly technological subspecialties. This ambiguity is illustrated in cancer genetics where research protocols are frequently used to provide access to procedures that may be offered as a clinical service in other specialties. The project on which this paper is based investigated lay and expert perceptions of the activities which take place within the cancer genetics clinic. Semi-structured interviews were conducted with 40 individuals who are involved in cancer genetics research in the UK, the majority (18 clinical geneticists, 10 genetic counsellors/nurse specialists) of whom also provide a clinical service. Interviewees emphasised the need to differentiate research from clinical care for service users, and provided regulatory, ethical, economic and translational justifications for distinguishing these activities. A number of strategies for differentiating research from clinical care were described by those who work as healthcare professionals, which involved deliberately displacing these activities in time and space. It is argued that by distinguishing research from clinical care clinical researchers are engaging in a form of boundary work which enables them to manage what they experience as a conflict of interest generated by the different roles they occupy within the cancer genetics clinic. Finally, we discuss the implications of these findings for the process of informed consent.
uk, cancer genetics, research ethics, boundary work, therapeutic misconception, informed consent
2010-2017
Hallowell, Nina
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Cooke, Sarah
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Crawford, Gill
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Lucassen, Anneke
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Parker, Michael
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June 2009
Hallowell, Nina
671cbd1f-fb44-40bc-86eb-be2b1d4d73ed
Cooke, Sarah
c5e8adab-bade-4801-95f2-70d37b013d5e
Crawford, Gill
c49ec103-2936-4897-8f25-96abe25b3a9f
Lucassen, Anneke
2eb85efc-c6e8-4c3f-b963-0290f6c038a5
Parker, Michael
f08fdd2b-3c14-472f-b222-0ced5bb71bd4
Hallowell, Nina, Cooke, Sarah, Crawford, Gill, Lucassen, Anneke and Parker, Michael
(2009)
Distinguishing research from clinical care in cancer genetics: theoretical justifications and practical strategies.
Social Science & Medicine, 68 (11), .
(doi:10.1016/j.socscimed.2009.03.010).
(PMID:19346047)
Abstract
The relationship between clinical research and clinical care is often perceived as unclear, particularly in highly technological subspecialties. This ambiguity is illustrated in cancer genetics where research protocols are frequently used to provide access to procedures that may be offered as a clinical service in other specialties. The project on which this paper is based investigated lay and expert perceptions of the activities which take place within the cancer genetics clinic. Semi-structured interviews were conducted with 40 individuals who are involved in cancer genetics research in the UK, the majority (18 clinical geneticists, 10 genetic counsellors/nurse specialists) of whom also provide a clinical service. Interviewees emphasised the need to differentiate research from clinical care for service users, and provided regulatory, ethical, economic and translational justifications for distinguishing these activities. A number of strategies for differentiating research from clinical care were described by those who work as healthcare professionals, which involved deliberately displacing these activities in time and space. It is argued that by distinguishing research from clinical care clinical researchers are engaging in a form of boundary work which enables them to manage what they experience as a conflict of interest generated by the different roles they occupy within the cancer genetics clinic. Finally, we discuss the implications of these findings for the process of informed consent.
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Published date: June 2009
Keywords:
uk, cancer genetics, research ethics, boundary work, therapeutic misconception, informed consent
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Local EPrints ID: 182487
URI: http://eprints.soton.ac.uk/id/eprint/182487
ISSN: 0277-9536
PURE UUID: 37a917b5-464e-404b-b8c3-083cd40122ad
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Date deposited: 27 Apr 2011 15:37
Last modified: 15 Mar 2024 03:11
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Author:
Nina Hallowell
Author:
Sarah Cooke
Author:
Michael Parker
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