Literature DB >> 28415857

Sharing Data to Build a Medical Information Commons: From Bermuda to the Global Alliance.

Robert Cook-Deegan1, Rachel A Ankeny2, Kathryn Maxson Jones3.   

Abstract

The Human Genome Project modeled its open science ethos on nematode biology, most famously through daily release of DNA sequence data based on the 1996 Bermuda Principles. That open science philosophy persists, but daily, unfettered release of data has had to adapt to constraints occasioned by the use of data from individual people, broader use of data not only by scientists but also by clinicians and individuals, the global reach of genomic applications and diverse national privacy and research ethics laws, and the rising prominence of a diverse commercial genomics sector. The Global Alliance for Genomics and Health was established to enable the data sharing that is essential for making meaning of genomic variation. Data-sharing policies and practices will continue to evolve as researchers, health professionals, and individuals strive to construct a global medical and scientific information commons.

Entities:  

Keywords:  data sharing; knowledge commons; model organisms; patents; science policy; sociology of science

Mesh:

Year:  2017        PMID: 28415857      PMCID: PMC5634517          DOI: 10.1146/annurev-genom-083115-022515

Source DB:  PubMed          Journal:  Annu Rev Genomics Hum Genet        ISSN: 1527-8204            Impact factor:   8.929


  90 in total

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Authors:  Benjamin Yang
Journal:  Discov Med       Date:  2004-04       Impact factor: 2.970

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Journal:  Genomics       Date:  1990-04       Impact factor: 5.736

Review 3.  Patents in genomics and human genetics.

Authors:  Robert Cook-Deegan; Christopher Heaney
Journal:  Annu Rev Genomics Hum Genet       Date:  2010       Impact factor: 8.929

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Authors:  Erika Check Hayden
Journal:  Nature       Date:  2014-03-20       Impact factor: 49.962

5.  Development of the clinical next-generation sequencing industry in a shifting policy climate.

Authors:  Margaret A Curnutte; Karen L Frumovitz; Juli M Bollinger; Amy L McGuire; David J Kaufman
Journal:  Nat Biotechnol       Date:  2014-10       Impact factor: 54.908

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Authors:  E Marshall
Journal:  Science       Date:  1995-02-10       Impact factor: 47.728

7.  Finishing the euchromatic sequence of the human genome.

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Journal:  Nature       Date:  2004-10-21       Impact factor: 49.962

8.  ENIGMA--evidence-based network for the interpretation of germline mutant alleles: an international initiative to evaluate risk and clinical significance associated with sequence variation in BRCA1 and BRCA2 genes.

Authors:  Amanda B Spurdle; Sue Healey; Andrew Devereau; Frans B L Hogervorst; Alvaro N A Monteiro; Katherine L Nathanson; Paolo Radice; Dominique Stoppa-Lyonnet; Sean Tavtigian; Barbara Wappenschmidt; Fergus J Couch; David E Goldgar
Journal:  Hum Mutat       Date:  2011-11-03       Impact factor: 4.878

9.  All the World's a Stage: Facilitating Discovery Science and Improved Cancer Care through the Global Alliance for Genomics and Health.

Authors:  Mark Lawler; Lillian L Siu; Heidi L Rehm; Stephen J Chanock; Gil Alterovitz; John Burn; Fabien Calvo; Denis Lacombe; Bin Tean Teh; Kathryn N North; Charles L Sawyers
Journal:  Cancer Discov       Date:  2015-11       Impact factor: 39.397

Review 10.  Human genome research in China.

Authors:  Boqin Qiang
Journal:  J Mol Med (Berl)       Date:  2004-04       Impact factor: 4.599

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  7 in total

1.  The Bermuda Triangle: The Pragmatics, Policies, and Principles for Data Sharing in the History of the Human Genome Project.

Authors:  Kathryn Maxson Jones; Rachel A Ankeny; Robert Cook-Deegan
Journal:  J Hist Biol       Date:  2018-12       Impact factor: 1.326

2.  The Brazilian Initiative on Precision Medicine (BIPMed): fostering genomic data-sharing of underrepresented populations.

Authors:  Cristiane S Rocha; Rodrigo Secolin; Maíra R Rodrigues; Benilton S Carvalho; Iscia Lopes-Cendes
Journal:  NPJ Genom Med       Date:  2020-10-02       Impact factor: 8.617

3.  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
Journal:  Genome Med       Date:  2017-09-22       Impact factor: 11.117

Review 4.  Genomics and data science: an application within an umbrella.

Authors:  Fábio C P Navarro; Hussein Mohsen; Chengfei Yan; Shantao Li; Mengting Gu; William Meyerson; Mark Gerstein
Journal:  Genome Biol       Date:  2019-05-29       Impact factor: 13.583

Review 5.  Digital Technologies and Data Science as Health Enablers: An Outline of Appealing Promises and Compelling Ethical, Legal, and Social Challenges.

Authors:  João V Cordeiro
Journal:  Front Med (Lausanne)       Date:  2021-07-08

6.  Genomic variant sharing: a position statement.

Authors:  Caroline F Wright; James S Ware; Anneke M Lucassen; Alison Hall; Anna Middleton; Nazneen Rahman; Sian Ellard; Helen V Firth
Journal:  Wellcome Open Res       Date:  2019-02-05

7.  Darwinian genomics and diversity in the tree of life.

Authors:  Taylorlyn Stephan; Shawn M Burgess; Hans Cheng; Charles G Danko; Clare A Gill; Erich D Jarvis; Klaus-Peter Koepfli; James E Koltes; Eric Lyons; Pamela Ronald; Oliver A Ryder; Lynn M Schriml; Pamela Soltis; Sue VandeWoude; Huaijun Zhou; Elaine A Ostrander; Elinor K Karlsson
Journal:  Proc Natl Acad Sci U S A       Date:  2022-01-25       Impact factor: 11.205

  7 in total

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