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 language | English (US) |
|---|---|
| Pages (from-to) | 371-376 |
| Number of pages | 6 |
| Journal | Nature Reviews Genetics |
| Volume | 13 |
| Issue number | 5 |
| DOIs | |
| State | Published - May 2012 |
| Externally published | Yes |
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ASJC Scopus subject areas
- Genetics
- Genetics(clinical)
- Molecular Biology
Cite this
From patients to partners : Participant-centric initiatives in biomedical research. / Kaye, Jane; Curren, Liam; Anderson, Nicholas; Edwards, Kelly; Fullerton, Stephanie M.; Kanellopoulou, Nadja; Lund, David; MacArthur, Daniel G.; Mascalzoni, Deborah; Shepherd, James; Taylor, Patrick L.; Terry, Sharon F.; Winter, Stefan F.
In: Nature Reviews Genetics, Vol. 13, No. 5, 05.2012, p. 371-376.Research output: Contribution to journal › Article
}
TY - JOUR
T1 - From patients to partners
T2 - Participant-centric initiatives in biomedical research
AU - Kaye, Jane
AU - Curren, Liam
AU - Anderson, Nicholas
AU - Edwards, Kelly
AU - Fullerton, Stephanie M.
AU - Kanellopoulou, Nadja
AU - Lund, David
AU - MacArthur, Daniel G.
AU - Mascalzoni, Deborah
AU - Shepherd, James
AU - Taylor, Patrick L.
AU - Terry, Sharon F.
AU - Winter, Stefan F.
PY - 2012/5
Y1 - 2012/5
N2 - 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.
AB - 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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U2 - 10.1038/nrg3218
DO - 10.1038/nrg3218
M3 - Article
VL - 13
SP - 371
EP - 376
JO - Nature Reviews Genetics
JF - Nature Reviews Genetics
SN - 1471-0056
IS - 5
ER -