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A Trust‐Based Pact in Research Biobanks. From Theory to Practice
Author(s) -
Sanchini Virginia,
Bonizzi Giuseppina,
Disalvatore Davide,
Monturano Massimo,
Pece Salvatore,
Viale Giuseppe,
Di Fiore Pier Paolo,
Boniolo Giovanni
Publication year - 2016
Publication title -
bioethics
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.494
H-Index - 55
eISSN - 1467-8519
pISSN - 0269-9702
DOI - 10.1111/bioe.12184
Subject(s) - biobank , informed consent , pact , context (archaeology) , quality (philosophy) , information quality , public relations , psychology , internet privacy , medicine , political science , information system , law , alternative medicine , computer science , epistemology , paleontology , philosophy , genetics , pathology , biology
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 E uropeo di Oncologia, a comprehensive cancer hospital in M ilan, I taly.