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- W2479683044 abstract "The Big Data vision for biomedicine supports compilation, long-term banking, and sharing of sensitive personal information, and potentially allows an individual’s data to be combined and utilised with other data indefinitely in innumerable research projects. But this vision does not adhere to the case-specific and jurisdiction-specific oversight models upon which current governance has been founded. Informed consent, for instance, a core principle of bioethics, no longer seems feasible as data repositories and Big Data methodologies become central to research. Policymakers have not yet found a consistent way to address ethical, legal, and social issues (ELSI) in this new data environment. Systematic ways of thinking are needed which reflect the new uses of biomedical data with a view toward upholding basic ELSI standards. The aim of this chapter is to present a view of governance where dataflow itself, not institutional or national boundaries, is taken as the de facto framework for research, and where metadata on consent play a central role in how data is governed. I identify types of consent as a place to begin to develop ELSI metadata procedures for data-enabled research contexts. Such metadata can assure data production, dissemination, and reuse is in accordance with participants’ and researchers’ expectations. Ultimately, it can assist with codification of criteria and standards that demonstrate impact of data intensive research along its ethical, legal, and social dimensions, at multiple levels of governance." @default.
- W2479683044 created "2016-08-23" @default.
- W2479683044 creator A5038446194 @default.
- W2479683044 date "2016-01-01" @default.
- W2479683044 modified "2023-09-23" @default.
- W2479683044 title "How Data Are Transforming the Landscape of Biomedical Ethics: The Need for ELSI Metadata on Consent" @default.
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- W2479683044 doi "https://doi.org/10.1007/978-3-319-33525-4_8" @default.
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