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  1. A Trade Secret Model For Genomic Biobanking.John Conley, Robert Mitchell, R. Cadigan, Arlene Davis & Allison Dobson - 2012 - Journal of Law, Medicine and Ethics 40 (3):612-629.
    Genomic biobanks present ethical challenges that are qualitatively unique and quantitatively unprecedented. Many critics have questioned whether the current system of informed consent can be meaningfully applied to genomic biobanking. Proposals for reform have come from many directions, but have tended to involve incremental change in current informed consent practice. This paper reports on our efforts to seek new ideas and approaches from those whom informed consent is designed to protect: research subjects. Our model emerged from semi-structured interviews with healthy (...)
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  • A Trade Secret Model for Genomic Biobanking.John M. Conley, Robert Mitchell, R. Jean Cadigan, Arlene M. Davis, Allison W. Dobson & Ryan Q. Gladden - 2012 - Journal of Law, Medicine and Ethics 40 (3):612-629.
    The current ethical norms of genomic biobanking creating and maintaining large repositories of human DNA and/or associated data for biomedical research have generated criticism from every angle, at both the practical and theoretical levels. The traditional research model has involved investigators seeking biospecimens for specific purposes that they can describe and disclose to prospective subjects, from whom they can then seek informed consent. In the case of many biobanks, however, the institution that collects and maintains the biospecimens may not itself (...)
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  • An effective multisource informed consent procedure for research and clinical practice: an observational study of patient understanding and awareness of their roles as research stakeholders in a cancer biobank. [REVIEW]Silvia Cervo, Jane Rovina, Renato Talamini, Tiziana Perin, Vincenzo Canzonieri, Paolo De Paoli & Agostino Steffan - 2013 - BMC Medical Ethics 14 (1):30.
    Efforts to improve patients’ understanding of their own medical treatments or research in which they are involved are progressing, especially with regard to informed consent procedures. We aimed to design a multisource informed consent procedure that is easily adaptable to both clinical and research applications, and to evaluate its effectiveness in terms of understanding and awareness, even in less educated patients.
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  • Biobanking and data sharing: a plurality of exchange regimes.Fabien Milanovic, David Pontille & Anne Cambon-Thomsen - 2007 - Genomics, Society and Policy 3 (1):1-14.
    Key activities in biomedicine and related research rely on collections of biological samples and related files. Access to such resources in industry and in academic contexts has become strategic and represents a central issue in the general framework of rising patenting practices and in debates about the knowledge economy. It raises important issues concerning the organisation of scientific and medical work, the outline of data-sharing guidelines, and science policy's contribution to the elaboration of an adapted framework. This paper presents an (...)
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  • Recommendation Rec(2006)4 of the Committee of Ministers to Member States on Research on Biological Materials of Human Origin. [REVIEW]Council of Europe & Committee of Ministers - 2006 - Jahrbuch für Wissenschaft Und Ethik 11 (1):387-394.
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