Search: id:"swepub:oai:DiVA.org:uu-245644" >
From patients to pa...
From patients to partners : participant-centric initiatives in biomedical research.
- Article/chapterEnglish2012
Publisher, publication year, extent ...
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2012-04-03
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Springer Science and Business Media LLC,2012
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printrdacarrier
Numbers
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LIBRIS-ID:oai:DiVA.org:uu-245644
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https://urn.kb.se/resolve?urn=urn:nbn:se:uu:diva-245644URI
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https://doi.org/10.1038/nrg3218DOI
Supplementary language notes
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Language:English
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Summary in:English
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Subject category:ref swepub-contenttype
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Subject category:art swepub-publicationtype
Notes
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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.
Subject headings and genre
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Curren, Liam
(author)
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Anderson, Nick
(author)
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Edwards, Kelly
(author)
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Fullerton, Stephanie M
(author)
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Kanellopoulou, Nadja
(author)
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Lund, David
(author)
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MacArthur, Daniel G
(author)
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Mascalzoni, DeborahUppsala universitet,Centrum för forsknings- och bioetik(Swepub:uu)debma696
(author)
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Shepherd, James
(author)
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Taylor, Patrick L
(author)
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Terry, Sharon F
(author)
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Winter, Stefan F
(author)
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Uppsala universitetCentrum för forsknings- och bioetik
(creator_code:org_t)
Related titles
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In:Nature reviews genetics: Springer Science and Business Media LLC13:5, s. 371-61471-00561471-0064
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Kaye, Jane
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Curren, Liam
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Anderson, Nick
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Edwards, Kelly
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Fullerton, Steph ...
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Kanellopoulou, N ...
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Lund, David
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MacArthur, Danie ...
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Mascalzoni, Debo ...
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Shepherd, James
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Taylor, Patrick ...
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Terry, Sharon F
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Winter, Stefan F
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- MEDICAL AND HEALTH SCIENCES
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MEDICAL AND HEAL ...
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and Health Sciences
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and Medical Ethics
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Uppsala University