articleEuropean Journal of Human GeneticsMay 7, 2014HYBRID OA

Dynamic consent: a patient interface for twenty-first century research networks

JKJane KayeEAEdgar A. WhitleyDJDavid J. LundMMMichael MorrisonHTHarriet Teare

University of Oxford · Wellcome Centre for Ethics and Humanities · +2 more institutions

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Abstract

Biomedical research is being transformed through the application of information technologies that allow ever greater amounts of data to be shared on an unprecedented scale. However, the methods for involving participants have not kept pace with changes in research capability. In an era when information is shared digitally at the global level, mechanisms of informed consent remain static, paper-based and organised around national boundaries and legal frameworks. Dynamic consent (DC) is both a specific project and a wider concept that offers a new approach to consent; one designed to meet the needs of the twenty-first century research landscape. At the heart of DC is a personalised, digital communication…

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Topics & keywords

Topics
Keywords
  • Biobank
  • Transparency (behavior)
  • Informed consent
  • Pace
  • Variety (cybernetics)
  • Interface (matter)
  • Internet privacy
  • Population
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