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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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Self-citationSharing human samples and patient data: Opening Pandora’s box
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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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