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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Autori: Sanchini, Virginia (Autore) ; Boniolo, Giovanni 1956- (Autore) ; Bonizzi, Giuseppina (Autore) ; Disalvatore, Davide (Autore) ; Fiore, Pier Paolo Di (Autore) ; Monturano, Massimo (Autore) ; Pece, Salvatore (Autore) ; Viale, Giuseppe (Autore)
Tipo di documento: Elettronico Articolo
Lingua:Inglese
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Fernleihe:Fernleihe für die Fachinformationsdienste
Pubblicazione: Wiley-Blackwell [2016]
In: Bioethics
Anno: 2016, Volume: 30, Fascicolo: 4, Pagine: 260-271
Notazioni IxTheo:KBJ Italia
NCH Etica della medicina
NCJ Etica della scienza
TK Età contemporanea
Altre parole chiave:B Consent
B pact
B Research
B Biobanca
B Trust
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Riepilogo: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
Comprende:Enthalten in: Bioethics
Persistent identifiers:DOI: 10.1111/bioe.12184