Broad consent in practice: lessons learned from a hospital-based biobank for prospective research on genomic and medical data.
Details
Serval ID
serval:BIB_264AC517F9E5
Type
Article: article from journal or magazin.
Collection
Publications
Institution
Title
Broad consent in practice: lessons learned from a hospital-based biobank for prospective research on genomic and medical data.
Journal
European journal of human genetics
ISSN
1476-5438 (Electronic)
ISSN-L
1018-4813
Publication state
Published
Issued date
07/2020
Peer-reviewed
Oui
Volume
28
Number
7
Pages
915-924
Language
english
Notes
Publication types: Journal Article
Publication Status: ppublish
Publication Status: ppublish
Abstract
Broad consent is increasingly recommended as an acceptable consent model for biobanking human samples and health data with a view to their future use in research. Empirical evidence on the practice of broad consent and its implementation in the hospital setting, however, is still very limited. We analyse and discuss results from a qualitative study of perceptions of a sample of patients and biobank recruiters regarding broad consent to participate in a hospital-based biobank for prospective research on genomic and health data. Our findings suggest that contextual and relational factors play an important role in the practice of broad consent, and illustrate that broad consent relies as much on intuition as on reasoning. Moreover, we show that seeking broad consent in the hospital affects patient-recruiter interaction and that "conditional" trust plays a significant role in broad-consent decision-making. In conclusion, we provide recommendations to improve patient autonomy in the context of hospital-based broad consent.
Pubmed
Web of science
Create date
22/11/2019 10:18
Last modification date
04/02/2021 9:17