Literature DB >> 22473380

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

Jane Kaye1, Liam Curren, Nick Anderson, Kelly Edwards, Stephanie M Fullerton, Nadja Kanellopoulou, David Lund, Daniel G MacArthur, Deborah Mascalzoni, James Shepherd, Patrick L Taylor, Sharon F Terry, Stefan F Winter.   

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.

Entities:  

Mesh:

Year:  2012        PMID: 22473380      PMCID: PMC3806497          DOI: 10.1038/nrg3218

Source DB:  PubMed          Journal:  Nat Rev Genet        ISSN: 1471-0056            Impact factor:   53.242


  18 in total

1.  Accelerated clinical discovery using self-reported patient data collected online and a patient-matching algorithm.

Authors:  Paul Wicks; Timothy E Vaughan; Michael P Massagli; James Heywood
Journal:  Nat Biotechnol       Date:  2011-04-24       Impact factor: 54.908

Review 2.  The tension between data sharing and the protection of privacy in genomics research.

Authors:  Jane Kaye
Journal:  Annu Rev Genomics Hum Genet       Date:  2012-03-09       Impact factor: 8.929

Review 3.  Clinical information systems: instant ubiquitous clinical data for error reduction and improved clinical outcomes.

Authors:  Craig F Feied; Jonathan A Handler; Mark S Smith; Michael Gillam; Meera Kanhouwa; Todd Rothenhaus; Keith Conover; Tony Shannon
Journal:  Acad Emerg Med       Date:  2004-11       Impact factor: 3.451

4.  Benefits of interoperability: a closer look at the estimates.

Authors:  Laurence C Baker
Journal:  Health Aff (Millwood)       Date:  2005 Jan-Jun       Impact factor: 6.301

5.  Electronic consent channels: preserving patient privacy without handcuffing researchers.

Authors:  Robert H Shelton
Journal:  Sci Transl Med       Date:  2011-02-09       Impact factor: 17.956

6.  BMA warns against letting patients have access to their electronic records.

Authors:  Michael Cross
Journal:  BMJ       Date:  2011-01-12

7.  The benefits of sharing clinical information.

Authors:  J M Teich
Journal:  Ann Emerg Med       Date:  1998-02       Impact factor: 5.721

8.  Assessing the privacy risks of data sharing in genomics.

Authors:  C Heeney; N Hawkins; J de Vries; P Boddington; J Kaye
Journal:  Public Health Genomics       Date:  2010-03-29       Impact factor: 2.000

9.  From single biobanks to international networks: developing e-governance.

Authors:  Jane Kaye
Journal:  Hum Genet       Date:  2011-07-23       Impact factor: 4.132

10.  Web-based genome-wide association study identifies two novel loci and a substantial genetic component for Parkinson's disease.

Authors:  Chuong B Do; Joyce Y Tung; Elizabeth Dorfman; Amy K Kiefer; Emily M Drabant; Uta Francke; Joanna L Mountain; Samuel M Goldman; Caroline M Tanner; J William Langston; Anne Wojcicki; Nicholas Eriksson
Journal:  PLoS Genet       Date:  2011-06-23       Impact factor: 5.917

View more
  105 in total

Review 1.  The tension between data sharing and the protection of privacy in genomics research.

Authors:  Jane Kaye
Journal:  Annu Rev Genomics Hum Genet       Date:  2012-03-09       Impact factor: 8.929

Review 2.  The long tail and rare disease research: the impact of next-generation sequencing for rare Mendelian disorders.

Authors:  Tony Shen; Ariel Lee; Carol Shen; C Jimmy Lin
Journal:  Genet Res (Camb)       Date:  2015-09-14       Impact factor: 1.588

3.  Information and Communication Technologies, Genes, and Peer-Production of Knowledge to Empower Citizens' Health.

Authors:  Annibale Biggeri; Mariachiara Tallacchini
Journal:  Sci Eng Ethics       Date:  2015-11-07       Impact factor: 3.525

4.  Big Data in medical research and EU data protection law: challenges to the consent or anonymise approach.

Authors:  Menno Mostert; Annelien L Bredenoord; Monique C I H Biesaart; Johannes J M van Delden
Journal:  Eur J Hum Genet       Date:  2015-11-11       Impact factor: 4.246

5.  The ethics of participant-led biomedical research.

Authors:  Effy Vayena; John Tasioulas
Journal:  Nat Biotechnol       Date:  2013-09       Impact factor: 54.908

6.  Privacy and protection in the genomic era.

Authors: 
Journal:  Nat Med       Date:  2013-09       Impact factor: 53.440

7.  Building a self-measuring healthcare system with computable metrics, data fusion, and substitutable apps.

Authors:  Kenneth D Mandl; Joshua C Mandel
Journal:  BMJ Outcomes       Date:  2015-04

8.  Patients as research partners; how to value their perceptions, contribution and labor?

Authors:  Elise Smith; Jean-Chrisophe Bélisle-Pipon; David Resnik
Journal:  Citiz Sci       Date:  2019-03-08

Review 9.  Evolving approaches to the ethical management of genomic data.

Authors:  Jean E McEwen; Joy T Boyer; Kathie Y Sun
Journal:  Trends Genet       Date:  2013-02-28       Impact factor: 11.639

Review 10.  Routes for breaching and protecting genetic privacy.

Authors:  Yaniv Erlich; Arvind Narayanan
Journal:  Nat Rev Genet       Date:  2014-05-08       Impact factor: 53.242

View more

北京卡尤迪生物科技股份有限公司 © 2022-2023.