From patients to partners: Participant-centric initiatives in biomedical research

Jane Kaye, Liam Curren, Nicholas Anderson, Kelly Edwards, Stephanie M. Fullerton, Nadja Kanellopoulou, David Lund, Daniel G. MacArthur, Deborah Mascalzoni, James Shepherd, Patrick L. Taylor, Sharon F. Terry, Stefan F. Winter

Research output: Contribution to journalArticle

181 Scopus citations

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.

Original languageEnglish (US)
Pages (from-to)371-376
Number of pages6
JournalNature Reviews Genetics
Volume13
Issue number5
DOIs
StatePublished - May 2012
Externally publishedYes

ASJC Scopus subject areas

  • Genetics
  • Genetics(clinical)
  • Molecular Biology

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    Kaye, J., Curren, L., Anderson, N., Edwards, K., Fullerton, S. M., Kanellopoulou, N., Lund, D., MacArthur, D. G., Mascalzoni, D., Shepherd, J., Taylor, P. L., Terry, S. F., & Winter, S. F. (2012). From patients to partners: Participant-centric initiatives in biomedical research. Nature Reviews Genetics, 13(5), 371-376. https://doi.org/10.1038/nrg3218