Abstract
Advances in computing technology and bioinformatics mean that medical research is increasingly characterized by large international consortia of researchers that are reliant on large data sets and biobanks. These trends raise a number of challenges for obtaining consent, protecting participant privacy concerns and maintaining public trust. Participant-centred initiatives (PCIs) use social media technologies to address these immediate concerns, but they also provide the basis for long-term interactive partnerships. Here, we give an overview of this rapidly moving field by providing an analysis of the different PCI approaches, as well as the benefits and challenges of implementing PCIs.
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Acknowledgements
J.K. would like to thank the Wellcome Trust (096599/2/11/Z). J.K., L.C., N.K. and D.L. thank EnCoRe (TSB/ESPRC/ESRC EP/G002541/1). K.E., S.M.F. and N.A. thank the UW Institute of Translational Health Sciences (NCRR/NCATS, UL1 RR025014). J.S. thanks the UK National Institute for Health Research Biomedical Research Centre in Oxford, UK. S.F.T. thanks the Health Resources and Services Administration at the US Department of Health and Human Services (U33MC07945-04).
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Kaye, J., Curren, L., Anderson, N. et al. From patients to partners: participant-centric initiatives in biomedical research. Nat Rev Genet 13, 371–376 (2012). https://doi.org/10.1038/nrg3218
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DOI: https://doi.org/10.1038/nrg3218