Better governance, better access: practising responsible data sharing in the METADAC governance infrastructure

Last updated: 05-04-2018

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Better governance, better access: practising responsible data sharing in the METADAC governance infrastructure

Abstract Genomic and biosocial research data about individuals is rapidly proliferating, bringing the potential for novel opportunities for data integration and use. The scale, pace and novelty of these applications raise a number of urgent sociotechnical, ethical and legal questions, including optimal methods of data storage, management and access. Although the open science movement advocates unfettered access to research data, many of the UK’s longitudinal cohort studies operate systems of ...


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