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

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

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.

Curren, Liam (author)
Anderson, Nick (author)
Edwards, Kelly (author)
Fullerton, Stephanie M (author)
Kanellopoulou, Nadja (author)
Lund, David (author)
MacArthur, Daniel G (author)
Mascalzoni, DeborahUppsala universitet,Centrum för forsknings- och bioetik(Swepub:uu)debma696 (author)
Shepherd, James (author)
Taylor, Patrick L (author)
Terry, Sharon F (author)
Winter, Stefan F (author)
Uppsala universitetCentrum för forsknings- och bioetik (creator_code:org_t)

In:Nature reviews genetics: Springer Science and Business Media LLC13:5, s. 371-61471-00561471-0064

By the author/editor: Kaye, Jane; Curren, Liam; Anderson, Nick; Edwards, Kelly; Fullerton, Steph ...; Kanellopoulou, N ...; show more...; Lund, David; MacArthur, Danie ...; Mascalzoni, Debo ...; Shepherd, James; Taylor, Patrick ...; Terry, Sharon F; Winter, Stefan F; show less...

About the subject

MEDICAL AND HEALTH SCIENCES: MEDICAL AND HEAL ...; and Health Sciences; and Medical Ethics

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