Article
Better governance, better access: practising responsible data sharing in the METADAC governance infrastructure.
Human genomics - 26 Apr 2018
Murtagh Madeleine J, Blell Mwenza T, Butters Olly W, Cowley Lorraine, Dove Edward S, Goodman Alissa, Griggs Rebecca L, Hall Alison, Hallowell Nina, Kumari Meena, Mangino Massimo, Maughan Barbara, Mills Melinda C, Minion Joel T, Murphy Tom, Prior Gillian, Suderman Matthew, Ring Susan M, Rogers Nina T, Roberts Stephanie J, Van der Straeten Catherine, Viney Will, Wiltshire Deborah, Wong Andrew, Walker Neil, Burton Paul R
Abstract excerpt
BACKGROUND: 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...
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