Literature DB >> 30994069

Characterizing the Biomedical Data-Sharing Landscape.

Angela G Villanueva1, Robert Cook-Deegan1, Barbara A Koenig1, Patricia A Deverka1, Erika Versalovic1, Amy L McGuire1, Mary A Majumder1.   

Abstract

Advances in technologies and biomedical informatics have expanded capacity to generate and share biomedical data. With a lens on genomic data, we present a typology characterizing the data-sharing landscape in biomedical research to advance understanding of the key stakeholders and existing data-sharing practices. The typology highlights the diversity of data-sharing efforts and facilitators and reveals how novel data-sharing efforts are challenging existing norms regarding the role of individuals whom the data describe.

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Year:  2019        PMID： 30994069      PMCID： PMC6730647          DOI： 10.1177/1073110519840481

Source DB:  PubMed          Journal:  J Law Med Ethics        ISSN： 1073-1105            Impact factor:   1.718


  12 in total

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4.  Consortium sandbox: building and sharing resources.

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5.  GENOMICS. A federated ecosystem for sharing genomic, clinical data.

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8.  Creating a data resource: what will it take to build a medical information commons?

Authors:  Patricia A Deverka; Mary A Majumder; Angela G Villanueva; Margaret Anderson; Annette C Bakker; Jessica Bardill; Eric Boerwinkle; Tania Bubela; Barbara J Evans; Nanibaa' A Garrison; Richard A Gibbs; Robert Gentleman; David Glazer; Melissa M Goldstein; Hank Greely; Crane Harris; Bartha M Knoppers; Barbara A Koenig; Isaac S Kohane; Salvatore La Rosa; John Mattison; Christopher J O'Donnell; Arti K Rai; Heidi L Rehm; Laura L Rodriguez; Robert Shelton; Tania Simoncelli; Sharon F Terry; Michael S Watson; John Wilbanks; Robert Cook-Deegan; Amy L McGuire
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9.  Towards a data sharing culture: recommendations for leadership from academic health centers.

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Journal:  PLoS Med       Date:  2008-09-02       Impact factor: 11.069

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  7 in total

1.  The Role of Participants in a Medical Information Commons.

Authors:  Mary A Majumder; Juli M Bollinger; Angela G Villanueva; Patricia A Deverka; Barbara A Koenig
Journal:  J Law Med Ethics       Date:  2019-03       Impact factor: 1.718

2.  What is a Medical Information Commons?

Authors:  Juli M Bollinger; Peter D Zuk; Mary A Majumder; Erika Versalovic; Angela G Villanueva; Rebecca L Hsu; Amy L McGuire; Robert Cook-Deegan
Journal:  J Law Med Ethics       Date:  2019-03       Impact factor: 1.718

3.  Who Owns the Data in a Medical Information Commons?

Authors:  Amy L McGuire; Jessica Roberts; Sean Aas; Barbara J Evans
Journal:  J Law Med Ethics       Date:  2019-03       Impact factor: 1.718

4.  Genomic Data-Sharing Practices.

Authors:  Angela G Villanueva; Robert Cook-Deegan; Jill O Robinson; Amy L McGuire; Mary A Majumder
Journal:  J Law Med Ethics       Date:  2019-03       Impact factor: 1.718

5.  Hopeful and Concerned: Public Input on Building a Trustworthy Medical Information Commons.

Authors:  Patricia A Deverka; Dierdre Gilmore; Jennifer Richmond; Zachary Smith; Rikki Mangrum; Barbara A Koenig; Robert Cook-Deegan; Angela G Villanueva; Mary A Majumder; Amy L McGuire
Journal:  J Law Med Ethics       Date:  2019-03       Impact factor: 1.718

6.  SCALEUS-FD: A FAIR Data Tool for Biomedical Applications.

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7.  Essential requirements for establishing and operating data trusts: practical guidance co-developed by representatives from fifteen canadian organizations and initiatives.

Authors:  P Alison Paprica; Eric Sutherland; Andrea Smith; Michael Brudno; Rosario G Cartagena; Monique Crichlow; Brian K Courtney; Chris Loken; Kimberlyn M McGrail; Alex Ryan; Michael J Schull; Adrian Thorogood; Carl Virtanen; Kathleen Yang
Journal:  Int J Popul Data Sci       Date:  2020-08-24
  7 in total

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