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
BMC Medical Ethics 15 (1):7 (2014)
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Abstract |
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 is done with their genetic data, amplify the privacy concerns
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DOI | 10.1186/1472-6939-15-7 |
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References found in this work BETA
Broadening Consent--And Diluting Ethics?B. Hofmann - 2009 - Journal of Medical Ethics 35 (2):125-129.
Caught You: Threats to Confidentiality Due to the Public Release of Large-Scale Genetic Data Sets. [REVIEW]Matthias Wjst - 2010 - BMC Medical Ethics 11 (1):1-4.
How Anonymous is 'Anonymous'? Some Suggestions Towards a Coherent Universal Coding System for Genetic Samples.Harald Schmidt & Shawneequa Callier - 2012 - Journal of Medical Ethics 38 (5):304-309.
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.
Recommendation Rec4 of the Committee of Ministers to Member States on Research on Biological Materials of Human Origin. [REVIEW]Committee of Min Council of Europe - 2006 - Jahrbuch für Wissenschaft Und Ethik 11 (1).
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Citations of this work BETA
Communicating Identifiability Risks to Biobank Donors.T. J. Kasperbauer, Mickey Gjerris, Gunhild Waldemar & Peter Sandøe - 2018 - Cambridge Quarterly of Healthcare Ethics 27 (1):123-136.
Locating Biobanks in the Canadian Privacy Maze.Katie M. Saulnier & Yann Joly - 2016 - Journal of Law, Medicine and Ethics 44 (1):7-19.
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