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

被引：200

作者：

Kaye, Jane ^{[1
]}

Curren, Liam ^{[2
]}

Anderson, Nick ^{[3
]}

Edwards, Kelly ^{[4
]}

Fullerton, Stephanie M. ^{[4
]}

Kanellopoulou, Nadja ^{[1
]}

Lund, David ^{[5
]}

MacArthur, Daniel G. ^{[6
]}

Mascalzoni, Deborah ^{[7
]}

Shepherd, James ^{[8
]}

Taylor, Patrick L. ^{[9
]}

Terry, Sharon F. ^{[10
]}

Winter, Stefan F. ^{[11
]}

机构：

[1] Univ Oxford, Dept Publ Hlth, HeLEX, Oxford OX3 7LF, England

[2] Univ Oxford, Res Serv, Oxford OX1 3ED, England

[3] Univ Washington, Dept Biomed Informat & Med Educ, Seattle, WA 98195 USA

[4] Univ Washington, Sch Med, Dept Bioeth & Humanities, Seattle, WA 98195 USA

[5] HW Commun Ltd, Lancaster LA1 4TZ, England

[6] Massachusetts Gen Hosp, Analyt & Translat Genet Unit, Boston, MA 02114 USA

[7] EURAC Res, Inst Med Genet, I-39100 Bolzano, Italy

[8] Churchill Hosp, NIHR Biomed Res Ctr, Joint Res Off, Oxford OX3 7LJ, England

[9] Harvard Univ, Sch Med, Dept Pediat, Boston, MA 02115 USA

[10] Genet Alliance, Washington, DC 20008 USA

[11] Hannover Med Sch, Ctr Publ Hlth Care, Inst Epidemiol Social Med & Hlth Care Syst Res, D-30625 Hannover, Germany

来源：

NATURE REVIEWS GENETICS | 2012年 / 13卷 / 05期

基金：

英国惠康基金;

关键词：

HEALTH;

D O I：

10.1038/nrg3218

中图分类号：

Q3 [遗传学];

学科分类号：

071007 ; 090102 ;

摘要：

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.

引用

页码：371 / 376

页数：6

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