Journal article

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

Jane Kaye, Edgar A Whitley, David Lund, Michael Morrison, Harriet Teare, Karen Melham

European Journal of Human Genetics | NATURE PUBLISHING GROUP | Published : 2015

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 co..

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University of Melbourne Researchers

Grants

Awarded by Wellcome Trust Award


Awarded by Innovative Medicines Initiative Joint Undertaking (StemBANCC)


Awarded by Innovative Medicines Initiative joint Undertaking


Awarded by Economic and Social Research Council


Awarded by Engineering and Physical Sciences Research Council


Funding Acknowledgements

JK is funded under Wellcome Trust Award 096599/2/11/Z and the EU F7 project BIOSHARE. MM is funded through Innovative Medicines Initiative Joint Undertaking under grant agreement number 115439 (StemBANCC), resources of which are composed of financial contribution from the European Union's Seventh Framework Programme (FP7/2007-2013) and EFPIA companies' in kind contribution. HT is funded under the Innovative Medicines Initiative joint Undertaking under grant agreement number 115005, resources of which are composed of financial contribution from the European Union's seventh Framework Programme (FP7/2007-2013) and EFPIA companies' in kind contribution. KM is funded under the NIHR Biomedical Research Centre, Oxford. Background work was partially supported by the Technology Strategy Board; the Engineering and Physical Sciences Research Council and the Economic and Social Research Council (grant number EP/G002541/1) for JK, EW and DL.