A Trust-Based Pact in Research Biobanks. From Theory to Practice

Traditional Informed Consent is becoming increasingly inadequate, especially in the context of research biobanks. How much information is needed by patients for their consent to be truly informed? How does the quality of the information they receive match up to the quality of the information they ou...

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Authors: Sanchini, Virginia (Author) ; Boniolo, Giovanni 1956- (Author) ; Bonizzi, Giuseppina (Author) ; Disalvatore, Davide (Author) ; Fiore, Pier Paolo Di (Author) ; Monturano, Massimo (Author) ; Pece, Salvatore (Author) ; Viale, Giuseppe (Author)
Format: Electronic Article
Language:English
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Published: Wiley-Blackwell [2016]
In: Bioethics
Year: 2016, Volume: 30, Issue: 4, Pages: 260-271
RelBib Classification:KBJ Italy
NCH Medical ethics
NCJ Ethics of science
TK Recent history
Further subjects:B Consent
B Biobank
B pact
B Research
B Trust
Online Access: Presumably Free Access
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Summary:Traditional Informed Consent is becoming increasingly inadequate, especially in the context of research biobanks. How much information is needed by patients for their consent to be truly informed? How does the quality of the information they receive match up to the quality of the information they ought to receive? How can information be conveyed fairly about future, non-predictable lines of research? To circumvent these difficulties, some scholars have proposed that current consent guidelines should be reassessed, with trust being used as a guiding principle instead of information. Here, we analyse one of these proposals, based on a Participation Pact, which is already being offered to patients at the Istituto Europeo di Oncologia, a comprehensive cancer hospital in Milan, Italy.
ISSN:1467-8519
Contains:Enthalten in: Bioethics
Persistent identifiers:DOI: 10.1111/bioe.12184