Lay and professional understandings of research and clinical activities in cancer genetics and their implications for informed consent
Lay and professional understandings of research and clinical activities in cancer genetics and their implications for informed consent
Research and clinical activities are often portrayed as arising from different motivations and having different goals. This study sought to determine lay and professional understandings of research and clinical care within the translational subspecialty of cancer genetics. Fifty-nine lay research participants and 20 professional stakeholders were interviewed. Research and clinical care were described in similar ways by both groups of interviewees, who distinguished these activities according to their temporal orientation and focus. Stakeholders' accounts tended to focus upon the epistemologicalmotivations underlying research activities,whereas research participants emphasized concrete goals, for example, finding a cure for cancer.We discuss the implications of these findings for informed consent.We argue that informed consent for research and clinical interventions should be redefined so that establishing potential research participants'/patients' understanding of the purpose of an intervention, why it is taking place, should be seen as secondary to confirming their understanding of its nature, namely, what will happen and the associated risks.
25-34
Hallowell, Nina
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Parry, Sarah
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Cooke, Sarah
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Crawford, Gill
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Lucassen, Anneke
2eb85efc-c6e8-4c3f-b963-0290f6c038a5
Parker, Michael
60739891-833c-46e4-8e0e-b318d61a3eaa
April 2010
Hallowell, Nina
671cbd1f-fb44-40bc-86eb-be2b1d4d73ed
Parry, Sarah
e21c58c4-4491-4a1d-ae7b-66f05d1d899d
Cooke, Sarah
c5e8adab-bade-4801-95f2-70d37b013d5e
Crawford, Gill
8d882352-f83d-4ba0-a63f-90b0e302242a
Lucassen, Anneke
2eb85efc-c6e8-4c3f-b963-0290f6c038a5
Parker, Michael
60739891-833c-46e4-8e0e-b318d61a3eaa
Hallowell, Nina, Parry, Sarah, Cooke, Sarah, Crawford, Gill, Lucassen, Anneke and Parker, Michael
(2010)
Lay and professional understandings of research and clinical activities in cancer genetics and their implications for informed consent.
AJOB Primary Research, 1 (2), .
(doi:10.1080/21507716.2010.492717).
Abstract
Research and clinical activities are often portrayed as arising from different motivations and having different goals. This study sought to determine lay and professional understandings of research and clinical care within the translational subspecialty of cancer genetics. Fifty-nine lay research participants and 20 professional stakeholders were interviewed. Research and clinical care were described in similar ways by both groups of interviewees, who distinguished these activities according to their temporal orientation and focus. Stakeholders' accounts tended to focus upon the epistemologicalmotivations underlying research activities,whereas research participants emphasized concrete goals, for example, finding a cure for cancer.We discuss the implications of these findings for informed consent.We argue that informed consent for research and clinical interventions should be redefined so that establishing potential research participants'/patients' understanding of the purpose of an intervention, why it is taking place, should be seen as secondary to confirming their understanding of its nature, namely, what will happen and the associated risks.
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Published date: April 2010
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Funding Information:
aThe Genetics Knowledge Parks were funded by the UK government (Department of Trade and Industry) in order to develop genetics research and foster the translation of knowledge and technology.
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During the course of my research career I (NH) have interviewed many individuals who have attended cancer genetics clinics about their experiences of risk management (e.g., genetic testing and risk-reducing surgery) for hereditary cancers. In each case the interviewee has been informed that I am a social scientist who wants to interview them for a social science research project. However, despite all of my efforts to make my aims and objectives clear, on many occasions I have been We thank all those who took part in this research, and Cancer Research UK, who funded this study, grant C8671/A5831. NH acknowledges the Leverhulme Trust for its support in the form of a Study Abroad Fellowship in 2008 and thanks the Centre for Health and Society at the University of Melbourne and the psychology departments at the University of Sydney and University of Adelaide, who hosted her while she was writing this paper. Address correspondence to Nina Hallowell, The ESRC Genomics Policy and Research Forum, University of Edinburgh, College of Humanities and Social Science, St. John’s Land, Holyrood Road, Edinburgh EH8 8AQ, UK. E-mail: Nina.Hallowell@ed.ac.uk treated as someone who can impart clinical advice and have been asked clinical questions. Of course, when this happens I stop the interview, explain why I am there, and (re)establish individuals’ consent to proceed with the research interview. However, these requests sometimes make me feel that I have been interviewing my research participants under false pretenses.
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Local EPrints ID: 469447
URI: http://eprints.soton.ac.uk/id/eprint/469447
ISSN: 2150-7716
PURE UUID: c4d98549-385b-4637-9e50-c4ab8d064bf8
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Date deposited: 14 Sep 2022 16:52
Last modified: 18 Mar 2024 02:54
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Contributors
Author:
Nina Hallowell
Author:
Sarah Parry
Author:
Sarah Cooke
Author:
Gill Crawford
Author:
Michael Parker
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