When research seems like clinical care: a qualitative study of the communication of individual cancer genetic research results

Persistent Link:
http://hdl.handle.net/10150/610035
Title:
When research seems like clinical care: a qualitative study of the communication of individual cancer genetic research results
Author:
Miller, Fiona; Giacomini, Mita; Ahern, Catherine; Robert, Jason; de Laat, Sonya
Affiliation:
Department of Health Policy, Management and Evaluation, University of Toronto, Toronto, Canada; Department of Clinical Epidemiology and Biostatistics, McMaster University, Hamilton, Canada; Department of Health, Aging and Society, McMaster University, Hamilton, Canada; Department of Basic Medical Sciences, University of Arizona College of Medicine, Phoenix, USA
Issue Date:
2008
Publisher:
BioMed Central
Citation:
BMC Medical Ethics 2008, 9:4 doi:10.1186/1472-6939-9-4
Journal:
BMC Medical Ethics
Rights:
© 2008 Miller et al; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0)
Collection Information:
This item is part of the UA Faculty Publications collection. For more information this item or other items in the UA Campus Repository, contact the University of Arizona Libraries at repository@u.library.arizona.edu.
Abstract:
BACKGROUND:Research ethicists have recently declared a new ethical imperative: that researchers should communicate the results of research to participants. For some analysts, the obligation is restricted to the communication of the general findings or conclusions of the study. However, other analysts extend the obligation to the disclosure of individual research results, especially where these results are perceived to have clinical relevance. Several scholars have advanced cogent critiques of the putative obligation to disclose individual research results. They question whether ethical goals are served by disclosure or violated by non-disclosure, and whether the communication of research results respects ethically salient differences between research practices and clinical care. Empirical data on these questions are limited. Available evidence suggests, on the one hand, growing support for disclosure, and on the other, the potential for significant harm.METHODS:This paper explores the implications of the disclosure of individual research results for the relationship between research and clinical care through analysis of research-based cancer genetic testing in Ontario, Canada in the late 1990s. We analyze a set of 30 interviews with key informants involved with research-based cancer genetic testing before the publicly funded clinical service became available in 2000.RESULTS:We advance three insights: First, the communication of individual research results makes research practices seem like clinical services for our respondents. Second, while valuing the way in which research enables a form of clinical access, our respondents experience these quasi-clinical services as inadequate. Finally, our respondents recognize the ways in which their experience with these quasi-clinical services is influenced by research imperatives, but understand and interpret the significance and appropriateness of these influences in different ways.CONCLUSION:Our findings suggest that the hybrid state created through the disclosure of research results about individuals that are perceived to be clinically relevant may produce neither sufficiently adequate clinical care nor sufficiently ethical research practices. These findings raise questions about the extent to which research can, and should, be made to serve clinical purposes, and suggest the need for further deliberation regarding any ethical obligation to communicate individual research results.
EISSN:
1472-6939
DOI:
10.1186/1472-6939-9-4
Version:
Final published version
Additional Links:
http://www.biomedcentral.com/1472-6939/9/4

Full metadata record

DC FieldValue Language
dc.contributor.authorMiller, Fionaen
dc.contributor.authorGiacomini, Mitaen
dc.contributor.authorAhern, Catherineen
dc.contributor.authorRobert, Jasonen
dc.contributor.authorde Laat, Sonyaen
dc.date.accessioned2016-05-20T08:57:03Z-
dc.date.available2016-05-20T08:57:03Z-
dc.date.issued2008en
dc.identifier.citationBMC Medical Ethics 2008, 9:4 doi:10.1186/1472-6939-9-4en
dc.identifier.doi10.1186/1472-6939-9-4en
dc.identifier.urihttp://hdl.handle.net/10150/610035-
dc.description.abstractBACKGROUND:Research ethicists have recently declared a new ethical imperative: that researchers should communicate the results of research to participants. For some analysts, the obligation is restricted to the communication of the general findings or conclusions of the study. However, other analysts extend the obligation to the disclosure of individual research results, especially where these results are perceived to have clinical relevance. Several scholars have advanced cogent critiques of the putative obligation to disclose individual research results. They question whether ethical goals are served by disclosure or violated by non-disclosure, and whether the communication of research results respects ethically salient differences between research practices and clinical care. Empirical data on these questions are limited. Available evidence suggests, on the one hand, growing support for disclosure, and on the other, the potential for significant harm.METHODS:This paper explores the implications of the disclosure of individual research results for the relationship between research and clinical care through analysis of research-based cancer genetic testing in Ontario, Canada in the late 1990s. We analyze a set of 30 interviews with key informants involved with research-based cancer genetic testing before the publicly funded clinical service became available in 2000.RESULTS:We advance three insights: First, the communication of individual research results makes research practices seem like clinical services for our respondents. Second, while valuing the way in which research enables a form of clinical access, our respondents experience these quasi-clinical services as inadequate. Finally, our respondents recognize the ways in which their experience with these quasi-clinical services is influenced by research imperatives, but understand and interpret the significance and appropriateness of these influences in different ways.CONCLUSION:Our findings suggest that the hybrid state created through the disclosure of research results about individuals that are perceived to be clinically relevant may produce neither sufficiently adequate clinical care nor sufficiently ethical research practices. These findings raise questions about the extent to which research can, and should, be made to serve clinical purposes, and suggest the need for further deliberation regarding any ethical obligation to communicate individual research results.en
dc.language.isoenen
dc.publisherBioMed Centralen
dc.relation.urlhttp://www.biomedcentral.com/1472-6939/9/4en
dc.rights© 2008 Miller et al; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0)en
dc.titleWhen research seems like clinical care: a qualitative study of the communication of individual cancer genetic research resultsen
dc.typeArticleen
dc.identifier.eissn1472-6939en
dc.contributor.departmentDepartment of Health Policy, Management and Evaluation, University of Toronto, Toronto, Canadaen
dc.contributor.departmentDepartment of Clinical Epidemiology and Biostatistics, McMaster University, Hamilton, Canadaen
dc.contributor.departmentDepartment of Health, Aging and Society, McMaster University, Hamilton, Canadaen
dc.contributor.departmentDepartment of Basic Medical Sciences, University of Arizona College of Medicine, Phoenix, USAen
dc.identifier.journalBMC Medical Ethicsen
dc.description.collectioninformationThis item is part of the UA Faculty Publications collection. For more information this item or other items in the UA Campus Repository, contact the University of Arizona Libraries at repository@u.library.arizona.edu.en
dc.eprint.versionFinal published versionen
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