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  1. Biobanks, Data Sharing, and the Drive for a Global Privacy Governance Framework.Edward S. Dove - 2015 - Journal of Law, Medicine and Ethics 43 (4):675-689.
    Spurred by a confluence of factors, most notably the decreasing cost of high-throughput technologies and advances in information technologies, a number of population research initiatives have emerged in recent years. These include large-scale, internationally collaborative genomic projects and biobanks, the latter of which can be defined as an organized collection of human biological material and associated data stored for one or more research purposes. Biobanks are a key emerging research infrastructure, and those established as prospective research resources comprising biospecimens and (...)
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  • Policy recommendations for addressing privacy challenges associated with cell-based research and interventions.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 - 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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  • Biobanking and the Abandonment of Informed Consent: An Ethical Imperative.Stephanie Solomon Cargill - 2016 - Public Health Ethics 9 (3):255-263.
    There has been extensive discussion in research ethics literature surrounding the appropriate form of informed consent for biobanking, whether with adapted content, or adapted forms such as broad or tiered consent. These discussions presuppose that it is possible to disclose adequate information at the outset to facilitate an informed choice to donate to a biobank. I will argue that informed consent cannot be achieved because in the biobanking context, we are either consenting to an enterprise that is not research or (...)
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  • 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.
    BackgroundLarge-scale genetic data sets are frequently shared with other research groups and even released on the Internet to allow for secondary analysis. Study participants are usually not informed about such data sharing because data sets are assumed to be anonymous after stripping off personal identifiers.DiscussionThe assumption of anonymity of genetic data sets, however, is tenuous because genetic data are intrinsically self-identifying. Two types of re-identification are possible: the "Netflix" type and the "profiling" type. The "Netflix" type needs another small genetic (...)
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  • Using human tissue: when do we need consent?L. Parker - 2011 - Journal of Medical Ethics 37 (12):759-761.
    Identifiable excess surgical tissue is an important resource for medical research but we have become overly restrictive about consent requirements. I suggest we devolve consent to ethics committees for ordinary research projects involving human tissue, retaining the requirement for explicit consent only for those sensitive research situations where there is significant risk of harm to individual interests in privacy.
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