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

Nature Reviews Genetics volume 13, pages 371–376 (2012)Cite this article

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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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Authors and Affiliations

  1. Department of Public Health, Jane Kaye and Nadja Kanellopoulou are at HeLEX, University of Oxford, Old Road Campus, Headington, Oxford OX3 7LF, UK.,

    Jane Kaye & Nadja Kanellopoulou

  2. Liam Curren is in Research Services at the University of Oxford, 9 Parkes Road, Oxford OX1 3ED, UK.,

    Liam Curren

  3. Nick Anderson is at the Department of Biomedical Informatics and Medical Education, University of Washington, Seattle, Washington 98195, USA.,

    Nick Anderson

  4. Kelly Edwards and Stephanie M. Fullerton are at the Department of Bioethics and Humanities, University of Washington School of Medicine, BOX 357120, Seattle, Washington 98195, USA.,

    Kelly Edwards & Stephanie M. Fullerton

  5. David Lund is at HW Communications Ltd, Parkfield, Greaves Road, Lancaster LA1 4TZ, UK.,

    David Lund

  6. Daniel G. MacArthur is at the Analytic and Translational Genetics Unit, Massachusetts General Hospital, Boston, Massachusetts 02114, USA.,

    Daniel G. MacArthur

  7. Deborah Mascalzoni is at the Institute of Genetic Medicine, EURAC Research, Viale Druso 1, I-39100 Bolzano, Italy.,

    Deborah Mascalzoni

  8. James Shepherd is at the NIHR Biomedical Research Centre, Joint Research Office, Block 60, Churchill Hospital, Old Road, Headington, Oxford OX3 7LJ, UK.,

    James Shepherd

  9. Patrick L. Taylor was at the Department of Pediatrics, Harvard Medical School, Boston, Massachusetts 02115, USA.,

    Patrick L. Taylor

  10. Sharon F. Terry is at the Genetic Alliance, 4301 Connecticut Avenue NW, Suite 404, Washington, DC 20008, USA.,

    Sharon F. Terry

  11. Stefan F. Winter is at the Centre for Public Health Care, Institute for Epidemiology, Social Medicine and Health Care System Research, Hannover Medical School, Carl-Neuberg-Strasse 1, 30625 Hannover, Germany.,

    Stefan F. Winter

Authors
  1. Jane Kaye
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  2. Liam Curren
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  3. Nick Anderson
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  4. Kelly Edwards
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  5. Stephanie M. Fullerton
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  6. Nadja Kanellopoulou
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  7. David Lund
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  8. Daniel G. MacArthur
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  9. Deborah Mascalzoni
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  10. James Shepherd
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  11. Patrick L. Taylor
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  12. Sharon F. Terry
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  13. Stefan F. Winter
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Corresponding author

Correspondence to Jane Kaye.

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The authors declare no competing financial interests.

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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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