Patients' decision to contribute to a biobank in the light of the patient-recruiter relationship-a qualitative study of broad consent in a hospital setting.

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State: Public
Version: author
License: CC BY 4.0
Serval ID
serval:BIB_79BB632CA47D
Type
Article: article from journal or magazin.
Collection
Publications
Institution
Title
Patients' decision to contribute to a biobank in the light of the patient-recruiter relationship-a qualitative study of broad consent in a hospital setting.
Journal
Journal of community genetics
Author(s)
Bosisio F., Barazzetti G., Koutaissoff D., Spencer B.
ISSN
1868-310X (Print)
ISSN-L
1868-310X
Publication state
Published
Issued date
01/2021
Peer-reviewed
Oui
Volume
12
Number
1
Pages
15-25
Language
english
Notes
Publication types: Journal Article
Publication Status: ppublish
Abstract
Findings from recent studies show that the relationship developed with the particular researcher asking for broad consent plays an important role in the participant's willingness to give consent. Interviews and focus groups were conducted in order to present a description and analysis of meetings in which broad consent took place and to examine the role of recruiters in the patients' decision-making and in building trust in the Lausanne University Hospital Institutional Biobank (BIL). Our findings suggest that patient broad consent to biobanking is strongly related to its setting. BIL recruiters' were aware of their role as ambassadors of the BIL and their responsibility towards patients. Patient interviewees were sensitive to the quality of the information delivered, the timing of the consent request and the recruiters' attitudes and behaviours, including the presence of the white coat. Participating in the BIL also seemed to reinforce the patient's self-esteem and perceived efficacy, particularly since they are themselves ill and inactive when requested to participate. Recruiters and participants report that participation may be motivated by fundamental (existential) goals. Organisational factors also affected recruiters' activity and the broad consent procedure raising several ethical issues. This qualitative study suggests that biobanking based on information-based models of decision-making might need to be re-evaluated in order to improve broad consent. Our findings have implications for the practice of broad consent and patient autonomy, as well as for the recruiters' role and training.
Keywords
Genetics(clinical), Public Health, Environmental and Occupational Health, Epidemiology, Biobank, Broad consent, Communication in healthcare, Genomic research, Health data, Shared decision-making, Trust
Pubmed
Web of science
Open Access
Yes
Funding(s)
CHUV / none
Create date
22/11/2019 11:26
Last modification date
16/07/2021 6:36
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