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From patients to partners: participant-centric initiatives in biomedical research
Open accessAbstract
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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“It was within the EnCoRe project that the notion of dynamic consent was first coined by Professor Kaye and her team [97] as a way to provide dynamic and granular options for revocation in system design [96].”
From Forgetting personal data and revoking consent under the GDPR: Challenges and proposed solutions (2018) · cites this paper as [97]
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Cites
Walker, J., Pan, E., Johnston, D., Adler-Milstein, J., Bates, D. W., & Middleton, B. (2005) · Health Affairs · doi:10.1377/hlthaff.w5.10 · Cited by 811
Do, C. B., Tung, J. Y., Dorfman, E., Kiefer, A. K., Drabant, E. M., Francke, U., Mountain, J. L., Goldman, S. M., Tanner, C. M., Langston, J. W., et al. (2011) · PLoS Genetics · doi:10.1371/journal.pgen.1002141 · Cited by 515
Web-Based, Participant-Driven Studies Yield Novel Genetic Associations for Common Traits
Eriksson, N., Macpherson, J. M., Tung, J. Y., Hon, L., Naughton, B., Saxonov, S., Avey, L., Wojcicki, A., Pe’er, I., & Mountain, J. L. (2010) · PLoS Genetics · doi:10.1371/journal.pgen.1000993 · Cited by 483
Wicks, P., Vaughan, T. E., Massagli, M. P., & Heywood, J. (2011) · Nature Biotechnology · doi:10.1038/nbt.1837 · Cited by 362
Research ethics and the challenge of whole-genome sequencing
McGuire, A. L., Caulfield, T., & Cho, M. K. (2007) · Nature Reviews Genetics · doi:10.1038/nrg2302 · Cited by 267
The tension between data sharing and the protection of privacy in genomics research
Kaye, J. (2012) · Annual Review of Genomics and Human Genetics · doi:10.1146/annurev-genom-082410-101454 · Cited by 240
Self-citationGenomic research and wide data sharing: Views of prospective participants
Trinidad, S. B., Fullerton, S. M., Bares, J. M., Jarvik, G. P., Larson, E. B., & Burke, W. (2010) · Genetics in Medicine · doi:10.1097/gim.0b013e3181e38f9e · Cited by 210
Self-citationCarroll, J. G. (2010) · Quality Management in Health Care · doi:10.1097/qmh.0b013e3181d1391c · Cited by 152
Assessing the Privacy Risks of Data Sharing in Genomics
Heeney, C., Hawkins, N., de Vries, J., Boddington, P., & Kaye, J. S. (2010) · Public Health Genomics · doi:10.1159/000294150 · Cited by 125
Self-citationMahoney, C. D., Berard-Collins, C., Coleman, R., Amaral, J. F., & Cotter, C. M. (2007) · American Journal of Health-System Pharmacy · doi:10.2146/ajhp060617 · Cited by 124
Flagged first, then by citations
Research works printed but not linked: 2
- Wagstaff, A. International biobanking regulations: the promise and the pitfalls. Cancer World 42, 23–29 (2011).
- Al-Ubaydli, M. A. & Smith, R. The BMA has adopted an old fashioned, paternalistic, and misguided policy by warning against patients having access to their electronic records. BMJ Rapid Response [online] , (2011).
Cited by
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van Veen, E.-B. (2013) · Diagnostic histopathology · doi:10.1016/j.mpdhp.2013.06.017 · Cited by 6
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Beier, K. (2022) · Springer eBooks · doi:10.1007/978-3-658-29047-4_14 · Cited by 5
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Akyüz, K., Goisauf, M., Martin, G., Mayrhofer, M. T., Antoniou, S., Charalambidou, G., Deltas, C., Malatras, A., Papagregoriou, G., Stefanou, C., et al. (2024) · Frontiers in Genetics · doi:10.3389/fgene.2024.1397156 · Cited by 4
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Staunton, C., Blom, J. M. C., & Mascalzoni, D. (2024) · Frontiers in Medicine · doi:10.3389/fmed.2024.1408600 · Cited by 5
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Soulier, A. (2019) · IEEE Technology and Society Magazine · doi:10.1109/mts.2019.2913072 · Cited by 5
Paul, K. T., & Palfinger, T. (2020) · Evidence & Policy · doi:10.1332/174426419x15752578285791 · Cited by 5
Hamakawa, N., Nakano, R., Kogetsu, A., Coathup, V., Kaye, J. S., Yamamoto, B. A., & Kato, Y. (2020) · Journal of Medical Internet Research · doi:10.2196/16441 · Cited by 6
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Daniore, P., Hurndall, K., Zavattaro, F., Leis, M., & Gille, F. (2025) · Data & Policy · doi:10.1017/dap.2024.95 · Cited by 4
Saha, K., & Hogle, L. F. (2014) · Cell stem cell · doi:10.1016/j.stem.2014.04.012 · Cited by 4
Schmietow, B. (2016) · Research ethics forum · doi:10.1007/978-3-319-28731-7_15 · Cited by 4
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Attar, S., Poustie, V. J., Smye, S., Beety, J. M., Hawcutt, D., Littlewood, S., Oni, L., Pirmohamed, M., & Beresford, M. W. (2019) · British Medical Bulletin · doi:10.1093/bmb/ldz003 · Cited by 3
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Skulmowski, A. (2025) · Mind Brain and Education · doi:10.1111/mbe.12435 · Cited by 4
Overcoming the obstacles to returning genomic research results
Lee, M. A., & Lin, J. (2013) · Genetics Research · doi:10.1017/s0016672313000050 · Cited by 3
Minari, J., Shirai, T., & Kato, K. (2014) · Life Sciences Society and Policy · doi:10.1186/s40504-014-0004-9 · Cited by 3
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Jonlin, E. C. (2015) · Current Stem Cell Reports · doi:10.1007/s40778-015-0015-3 · Cited by 3
Mittelstadt, B., & Floridi, L. (2016) · Law, governance and technology series · doi:10.1007/978-3-319-33525-4_1 · Cited by 3
Labrie, D., Lapierre, N., Mortenson, W. B., Allaire, A.-S., Schmouth, M.-È., & Routhier, F. (2024) · Disability and Rehabilitation Assistive Technology · doi:10.1080/17483107.2024.2326593 · Cited by 3
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Chang, C.-T. (2019) · Michigan Technology Law Review · doi:10.36645/mtlr.25.2.bank · Cited by 3
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Rivera, M. C., & Izard, J. (2014) · Elsevier eBooks · doi:10.1016/b978-0-12-410472-3.00010-5 · Cited by 3
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(2013) · Nature Medicine · doi:10.1038/nm.3342 · Cited by 3
Motegi, M., Noda, T., Morino, T., Torii, J., Ohto, H., Yoshida, S., Tada, H., Matsuyama, T., & Chikamatsu, K. (2025) · Journal of Adolescent Health · doi:10.1016/j.jadohealth.2025.06.018 · Cited by 2
Mandl, K. D., & Mandel, J. C. (2015) · PubMed · Cited by 2
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Choi, Y., & McGregor, C. (2017) · IEEE International Conference on Healthcare Informatics (ICHI) · doi:10.1109/ichi.2017.88 · Cited by 2
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Terry, S. F., Runkle, D. C., & Ricks, P. (2018) · doi:10.23970/ahrqregistriesgenerated · Cited by 2
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Maierà, A. (2023) · GDPR Requirements for Biobanking Activities Across Europe · doi:10.1007/978-3-031-42944-6_9 · Cited by 1
Mathieu, M., Hammond, C., & Karlin, D. (2015) · PLoS Biology · doi:10.1371/journal.pbio.1002067 · Cited by 1
Grant, J., Yates‐Doerr, E., Kowal, E., MEYERS, T., Raikhel, E., Redfield, P., Abramowitz, S. A., Andersen, B., & Moyer, E. M. (2015) · Medicine Anthropology Theory · doi:10.17157/mat.2.1.216 · Cited by 1
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Lund, D., Mourikas, G., Ammar, B., Magzoub, A., & Catterall, N. (2016) · International Conference on Advanced Information Networking and Applications Workshops (WAINA) · doi:10.1109/waina.2016.176 · Cited by 1
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Suver, C., Wilbanks, J., & Friend, S. H. (2013) · SSRN Electronic Journal · doi:10.2139/ssrn.2234133
Forgo, N. P., Góralczyk, M., & Hänold, S. (2013) · Annual International Conference of the IEEE Engineering in Medicine and Biology Society (EMBC) · doi:10.1109/embc.2013.6610468
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Palazzani, L. (2019) · Springer eBooks · doi:10.1007/978-3-030-16733-2_3
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Boeckhout, M., Scheltens, P., Manders, P., Smit, C., Bredenoord, A. L., & Zielhuis, G. A. (2018) · PubMed Central
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Dorn, A., Wandl-Vogt, E., Palfinger, T., Therón, R., Way, A., Abgaz, Y. M., & Benito-Santos, A. (2021) · Digital Scholarship in the Humanities · doi:10.1093/llc/fqab004
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Laurie, G. T. (2021) · Cambridge University Press eBooks · doi:10.1017/9781108620024.028
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Mastroianni, A. C., & Kahn, J. P. (2021) · doi:10.1093/oso/9780197587058.003.0002
Ficorilli, A. (2022) · Human perspectives in health sciences and technology · doi:10.1007/978-3-030-74804-3_13
Cabezas, P. C., & Eriksson, S. (2014) · Recerca Revista de pensament i anàlisi · doi:10.6035/recerca.15.1
Framroze, Z., Rinaldo, F. M., Lewis, E., Steels, J.-C., & Dickinson, H. A. (2023) · doi:10.2196/preprints.46416
Mattei, P. (2023) · Bristol University Press eBooks · doi:10.47674/9781529223972
Mattei, P. (2023) · Bristol University Press eBooks · doi:10.51952/9781529223972.bm002
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Gupta, I. (2024) · Springer eBooks · doi:10.1007/978-981-99-6778-0_5
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Gregory, S., Bunnik, E. M., Callado, A. B., Carrié, I., De Boer, C., Duffus, J., Fauria, K., Forster, S., Gove, D., Knezevic, I., et al. (2020) · Figshare · doi:10.6084/m9.figshare.13101168
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Metadata
- Authors
- 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.
- Affiliations
- University of Oxford (GB)
- University of Washington (US)
- HW Communications (United Kingdom) (GB)
- Harvard University (US)
- Eurac Research (IT)
- Churchill Hospital (GB)
- Genetic Alliance (US)
- Medizinische Hochschule Hannover (DE)
- Corresponding author
- Kaye, Jane
- ORCID
- Venue
- Nature Reviews Genetics
- Published
- 2012-04-03
- Volume
- 13
- Issue
- 5
- Pages
- 371-376
- ISSN
- 1471-0056 (ISSN-L)
- 1471-0064
- PMC
- PMC3806497
- OpenAlex
- W2027139930
- Cited by
- 293
- References
- 25
- Citations by year
- 2026: 7 · 2025: 6 · 2024: 13 · 2023: 11 · 2022: 13 · 2021: 18 · 2020: 13 · 2019: 24 · 2018: 22 · 2017: 18 · 2016: 30 · 2015: 33 · 2014: 38 · 2013: 32 · 2012: 14
- FWCI
- 5.71
- Type
- journal article
- Language
- en
- Open access
- green
- europepmc.org
- Licence
- www.springer.com/tdm (tdm)
- Locations
- Nature Reviews Genetics (publishedVersion)
- PubMed (publishedVersion)
- Europe PMC (PubMed Central) (acceptedVersion)
- PubMed Central (acceptedVersion)
- Funders
- Wellcome Trust (096599/2/11/Z, 096599)
- Engineering and Physical Sciences Research Council (EP/G002541/1)
- National Center for Research Resources (UL1RR025014)
- Topics
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics in Clinical Research
- Social Sciences › Health › Social Media in Health Education
- Health Sciences › Health Professions › General Health Professions › Mental Health and Patient Involvement
- Keywords
- social media, research participant engagement, research governance, participant privacy, public trust in research, biobanks, research consortium
- MeSH terms
- Humans, Informed Consent, Privacy, Computational Biology, Biomedical Research, Social Media
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