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

Author:

Deverka Patricia A.,Majumder Mary A.,Villanueva Angela G.,Anderson Margaret,Bakker Annette C.,Bardill Jessica,Boerwinkle Eric,Bubela Tania,Evans Barbara J.,Garrison Nanibaa’ A.,Gibbs Richard A.,Gentleman Robert,Glazer David,Goldstein Melissa M.,Greely Hank,Harris Crane,Knoppers Bartha M.,Koenig Barbara A.,Kohane Isaac S.,La Rosa Salvatore,Mattison John,O’Donnell Christopher J.,Rai Arti K.,Rehm Heidi L.,Rodriguez Laura L.,Shelton Robert,Simoncelli Tania,Terry Sharon F.,Watson Michael S.,Wilbanks John,Cook-Deegan Robert,McGuire Amy L.

Funder

National Human Genome Research Institute

National Patient-Centered Clinical Research Network

Robert Wood Johnson Foundation's Health Data Exploration Project

Publisher

Springer Science and Business Media LLC

Subject

Genetics (clinical),Genetics,Molecular Biology,Molecular Medicine

Reference21 articles.

1. The NationalAcademies Press. Toward precision medicine: building a knowledge network for biomedical research and a new taxonomy of disease. 2011. https://www.nap.edu/catalog/13284/toward-precision-medicine-building-a-knowledge-network-for-biomedical-research . Accessed 8 September 2017.

2. Cook-Deegan R, Ankeny RA, Jones KM. Sharing data to build a medical information commons: from Bermuda to the Global Alliance. Annu Rev Genomics Hum Genet. 2017;18:389–415.

3. Ostrom E. Analyzing long-enduring, self-organized, and self-governed CPRs. In: Governing the commons: the evolution of institutions for collective action. 1st ed. Cambridge; New York: Cambridge University Press; 1990. p. 58–102.

4. Hess C, Ostrom E, editors. Understanding knowledge as a commons: from theory to practice. Cambridge: MIT Press; 2007.

5. Schofield PN, Bubela T, Weaver T, Portilla L, Brown SD, Hancock JM, et al. Post-publication sharing of data and tools. Nature. 2009;461:171–3.

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