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  1.  6
    Emmanuelle Lévesque, Yann Joly & Jacques Simard (2011). Return of Research Results: General Principles and International Perspectives. Journal of Law, Medicine & Ethics 39 (4):583-592.
    Five years ago, an article co-written by two of us (Joly and Simard) presented an emerging trend to disclose certain individual genetic results to research participants. Since then, both technologies and research practices have evolved significantly. Given this rapid evolution, our goal is to provide updated and thorough guidance on this issue. Our paper begins by identifying the ethical principles that support the return of results: justice, beneficence, and respect for persons. Then, it presents the results of an analysis (...)
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  2. Emmanuelle Lévesque, Yann Joly & Jacques Simard (2011). Return of Research Results: General Principles and International Perspectives. Journal of Law, Medicine and Ethics 39 (4):583-592.
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  3.  1
    Haidan Chen, Benny Chan & Yann Joly (2015). Privacy and Biobanking in China: A Case of Policy in Transition. Journal of Law, Medicine and Ethics 43 (4):726-742.
    Disease-based biobanks have operated in hospitals and research institutes in China for decades, and China has recently embarked on a plan to establish further biobank networks with the aim of promoting data sharing among the existing biobanks. Although the Chinese Constitution has only recently begun to recognize individual privacy as a distinct and independent constitutional right, biobanking in China has been loosely regulated under a patchwork of sometimes overlapping laws and regulatory instruments, as well as and the policies of individual (...)
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  4.  2
    Gabrielle Bertier, Ma'N. H. Zawati & Yann Joly (2015). The Role of Whole Genome and Whole Exome Sequencing in Preventive Genomic Sequencing Programs. American Journal of Bioethics 15 (7):22-24.
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  5.  15
    Bartha M. Knoppers, Yann Joly & Vural Ozdemir (2011). ACCE, Pharmacogenomics, and Stopping Clinical Trials: Time to Extend the CONSORT Statement? American Journal of Bioethics 11 (3):11-13.
    (2011). ACCE, Pharmacogenomics, and Stopping Clinical Trials: Time to Extend the CONSORT Statement? The American Journal of Bioethics: Vol. 11, No. 3, pp. 11-13.
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  6.  3
    Vassilis Ragoussis, Ida Ngueng Feze & Yann Joly (2014). Sharing Genetic Information Online: An Exploration of GINA's 2.0 Frontier. American Journal of Bioethics 14 (11):53-55.
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  7.  8
    Yann Joly, Clarissa Allen & Bartha M. Knoppers (2012). Currents in Contemporary Bioethics. Journal of Law, Medicine & Ethics 40 (1):143-146.
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  8.  2
    Ubaka Ogbogu, Sarah Burningham, Adam Ollenberger, Kathryn Calder, Li Du, Khaled El Emam, Robyn Hyde-Lay, Rosario Isasi, Yann Joly, Ian Kerr, Bradley Malin, Michael McDonald, Steven Penney, Gayle Piat, Denis-Claude Roy, Jeremy Sugarman, Suzanne Vercauteren, Griet Verhenneman, Lori West & Timothy Caulfield (2014). Policy Recommendations for Addressing Privacy Challenges Associated with Cell-Based Research and Interventions. BMC Medical Ethics 15 (1):7.
    The increased use of human biological material for cell-based research and clinical interventions poses risks to the privacy of patients and donors, including the possibility of re-identification of individuals from anonymized cell lines and associated genetic data. These risks will increase as technologies and databases used for re-identification become affordable and more sophisticated. Policies that require ongoing linkage of cell lines to donors’ clinical information for research and regulatory purposes, and existing practices that limit research participants’ ability to control what (...)
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  9.  7
    Vural Ozdemir, Yann Joly, Edward S. Dove, Aspasia Karalis, Denise Avard & Bartha M. Knoppers (2012). Are We Asking the Right Ethics Questions on Drug Shortages? Suggestions for a Global and Anticipatory Ethics Framework. American Journal of Bioethics 12 (1):13 - 15.
    The American Journal of Bioethics, Volume 12, Issue 1, Page 13-15, January 2012.
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  10.  2
    Yann Joly & Gillian Nycum (2007). Currents in Contemporary Ethics. Journal of Law, Medicine & Ethics 35 (4):734-738.
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  11. Yann Joly & Gillian Nycum (2007). Currents in Contemporary Ethics. Journal of Law, Medicine and Ethics 35 (4):734-738.
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  12. Yann Joly, Clarissa Allen & Bartha M. Knoppers (2012). Currents in Contemporary Bioethics. Journal of Law, Medicine and Ethics 40 (1):143-146.
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  13. Adrian Thorogood, Yann Joly, Bartha Maria Knoppers, Tommy Nilsson, Peter Metrakos, Anthoula Lazaris & Ayat Salman (2014). An Implementation Framework for the Feedback of Individual Research Results and Incidental Findings in Research. BMC Medical Ethics 15 (1):88.
    This article outlines procedures for the feedback of individual research data to participants. This feedback framework was developed in the context of a personalized medicine research project in Canada. Researchers in this domain have an ethical obligation to return individual research results and/or material incidental findings that are clinically significant, valid and actionable to participants. Communication of individual research data must proceed in an ethical and efficient manner. Feedback involves three procedural steps: assessing the health relevance of a finding, re-identifying (...)
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