4 found
Adrian Thorogood [4]Adrian M. Thorogood [1]
  1.  47
    Introduction: Sharing Data in a Medical Information Commons.Amy L. McGuire, Mary A. Majumder, Angela G. Villanueva, Jessica Bardill, Juli M. Bollinger, Eric Boerwinkle, Tania Bubela, Patricia A. Deverka, Barbara J. Evans, Nanibaa' A. Garrison, David Glazer, Melissa M. Goldstein, Henry T. Greely, Scott D. Kahn, Bartha M. Knoppers, Barbara A. Koenig, J. Mark Lambright, John E. Mattison, Christopher O'Donnell, Arti K. Rai, Laura L. Rodriguez, Tania Simoncelli, Sharon F. Terry, Adrian M. Thorogood, Michael S. Watson, John T. Wilbanks & Robert Cook-Deegan - 2019 - Journal of Law, Medicine and Ethics 47 (1):12-20.
    Drawing on a landscape analysis of existing data-sharing initiatives, in-depth interviews with expert stakeholders, and public deliberations with community advisory panels across the U.S., we describe features of the evolving medical information commons. We identify participant-centricity and trustworthiness as the most important features of an MIC and discuss the implications for those seeking to create a sustainable, useful, and widely available collection of linked resources for research and other purposes.
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  2.  33
    An implementation framework for the feedback of individual research results and incidental findings in research.Adrian Thorogood, Yann Joly, Bartha Maria Knoppers, Tommy Nilsson, Peter Metrakos, Anthoula Lazaris & Ayat Salman - 2014 - 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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  3.  21
    International Guidelines for Privacy in Genomic Biobanking.Adrian Thorogood & Ma'N. H. Zawati - 2015 - Journal of Law, Medicine and Ethics 43 (4):690-702.
    In an era of unrivalled sequencing, computation and networking capability, international sharing of genomic samples and data is becoming a modus operandi for modern medical research. Researchers are collaborating to establish large collections with global scale. Having never before set foot outside the cell, the molecules that shape us are being digitized and launched across the globe. Protecting individual privacy interests in this information is a central challenge of the genomic research era. This article reviews international privacy norms governing human (...)
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  4. Data access governance.Mahsa Shabani, Adrian Thorogood & Madeline Murtagh - 2021 - In G. T. Laurie (ed.), The Cambridge handbook of health research regulation. Cambridge University Press.
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