Distinguishing research from clinical care in cancer genetics: Theoretical justifications and practical strategies

Nina Hallowell, Sarah Cooke, Gill Crawford, Anneke Lucassen and Michael Parker

Social Science & Medicine, 2009, vol. 68, issue 11, 2010-2017

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.

Keywords: UK; Cancer; genetics; Research; ethics; Boundary; work; Therapeutic; misconception; Informed; consent (search for similar items in EconPapers)
Date: 2009
References: View references in EconPapers View complete reference list from CitEc
Citations: View citations in EconPapers (6)

Downloads: (external link)
http://www.sciencedirect.com/science/article/pii/S0277-9536(09)00173-7
Full text for ScienceDirect subscribers only

Related works:
This item may be available elsewhere in EconPapers: Search for items with the same title.

Export reference: BibTeX RIS (EndNote, ProCite, RefMan) HTML/Text

Persistent link: https://EconPapers.repec.org/RePEc:eee:socmed:v:68:y:2009:i:11:p:2010-2017

Ordering information: This journal article can be ordered from
http://www.elsevier.com/wps/find/supportfaq.cws_home/regional
http://www.elsevier. ... _01_ooc_1&version=01

Access Statistics for this article

Social Science & Medicine is currently edited by Ichiro (I.) Kawachi and S.V. (S.V.) Subramanian

More articles in Social Science & Medicine from Elsevier
Bibliographic data for series maintained by Catherine Liu ().