Literature DB >> 27082668

An International Framework for Data Sharing: Moving Forward with the Global Alliance for Genomics and Health.

Vasiliki Rahimzadeh1, Stephanie O M Dyke1, Bartha M Knoppers1.   

Abstract

The Global Alliance for Genomics and Health is marshaling expertise in biomedical research and data sharing policy to propel bench-to-bedside translation of genomics in parallel with many of the BioSHaRE-EU initiatives described at length in this Issue. Worldwide representation of institutions, funders, researchers, and patient advocacy groups at the Global Alliance is testament to a shared ideal that sees maximizing the public good as a chief priority of genomic innovation in health. The Global Alliance has made a critical stride in this regard with the development of its Framework for Responsible Sharing of Genomic and Health-related Data.(1) This article first discusses the human rights pillars that underlie the Framework and mission of the Global Alliance. Second, it outlines the Global Alliance's use of data governance policies through a number of demonstration projects. Finally, the authors describe how the Global Alliance envisions international data sharing moving forward in the postgenomic era.

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Year:  2016        PMID: 27082668     DOI: 10.1089/bio.2016.0005

Source DB:  PubMed          Journal:  Biopreserv Biobank        ISSN: 1947-5543            Impact factor:   2.300


  7 in total

1.  Challenges for the standardized reporting of NGS HLA genotyping: Surveying gaps between clinical and research laboratories.

Authors:  Kazutoyo Osoegawa; Gonzalo Montero-Martín; Kalyan C Mallempati; Miranda Bauer; Robert P Milius; Martin Maiers; Marcelo A Fernández-Viña; Steven J Mack
Journal:  Hum Immunol       Date:  2021-09-01       Impact factor: 2.850

Review 2.  Society and personal genome data.

Authors:  Anna Middleton
Journal:  Hum Mol Genet       Date:  2018-05-01       Impact factor: 6.150

3.  A nomenclature and classification for the congenital myasthenic syndromes: preparing for FAIR data in the genomic era.

Authors:  Rachel Thompson; Angela Abicht; David Beeson; Andrew G Engel; Bruno Eymard; Emmanuel Maxime; Hanns Lochmüller
Journal:  Orphanet J Rare Dis       Date:  2018-11-26       Impact factor: 4.123

4.  Targeted therapies for congenital myasthenic syndromes: systematic review and steps towards a treatabolome.

Authors:  Rachel Thompson; Gisèle Bonne; Paolo Missier; Hanns Lochmüller
Journal:  Emerg Top Life Sci       Date:  2019-01-28

5.  BioHackathon 2015: Semantics of data for life sciences and reproducible research.

Authors:  Rutger A Vos; Toshiaki Katayama; Hiroyuki Mishima; Shin Kawano; Shuichi Kawashima; Jin-Dong Kim; Yuki Moriya; Toshiaki Tokimatsu; Atsuko Yamaguchi; Yasunori Yamamoto; Hongyan Wu; Peter Amstutz; Erick Antezana; Nobuyuki P Aoki; Kazuharu Arakawa; Jerven T Bolleman; Evan Bolton; Raoul J P Bonnal; Hidemasa Bono; Kees Burger; Hirokazu Chiba; Kevin B Cohen; Eric W Deutsch; Jesualdo T Fernández-Breis; Gang Fu; Takatomo Fujisawa; Atsushi Fukushima; Alexander García; Naohisa Goto; Tudor Groza; Colin Hercus; Robert Hoehndorf; Kotone Itaya; Nick Juty; Takeshi Kawashima; Jee-Hyub Kim; Akira R Kinjo; Masaaki Kotera; Kouji Kozaki; Sadahiro Kumagai; Tatsuya Kushida; Thomas Lütteke; Masaaki Matsubara; Joe Miyamoto; Attayeb Mohsen; Hiroshi Mori; Yuki Naito; Takeru Nakazato; Jeremy Nguyen-Xuan; Kozo Nishida; Naoki Nishida; Hiroyo Nishide; Soichi Ogishima; Tazro Ohta; Shujiro Okuda; Benedict Paten; Jean-Luc Perret; Philip Prathipati; Pjotr Prins; Núria Queralt-Rosinach; Daisuke Shinmachi; Shinya Suzuki; Tsuyosi Tabata; Terue Takatsuki; Kieron Taylor; Mark Thompson; Ikuo Uchiyama; Bruno Vieira; Chih-Hsuan Wei; Mark Wilkinson; Issaku Yamada; Ryota Yamanaka; Kazutoshi Yoshitake; Akiyasu C Yoshizawa; Michel Dumontier; Kenjiro Kosaki; Toshihisa Takagi
Journal:  F1000Res       Date:  2020-02-24

6.  Policies and strategies to facilitate secondary use of research data in the health sciences.

Authors:  Paul R Burton; Natalie Banner; Mark J Elliot; Bartha Maria Knoppers; James Banks
Journal:  Int J Epidemiol       Date:  2017-12-01       Impact factor: 7.196

7.  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 in total

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