Accès ouvert déclaré 2018 article

Registered access: authorizing data access

Stephanie O. M. Dyke, Mikael Lindén, Ilkka Lappalainen, Jordi Rambla, Knox Carey, David Lloyd, Dylan Spalding, Moran N. Cabili, Giselle Kerry, Julia Foreman, Tim Cutts, Mahsa Shabani, Laura Lyman Rodriguez, Maximilian Haeussler, Brian Walsh, Xiaoqian Jiang, Shuang Wang, Daniel Perrett, Tiffany Boughtwood, Andreas Matern, Anthony J. Brookes, Miro Cupak, Marc Fiume, Ravi Pandya, Ilia Tulchinsky, Serena Scollen, Juha Törnroos, Samir Das, Alan C. Evans, Bradley Malin, Stephan Beck, Steven E. Brenner, Tommi Nyrönen, Niklas Blomberg, Helen V. Firth, Matthew E. Hurles, Anthony Philippakis, Gunnar Rätsch, Michael Brudno, Kym M. Boycott, Heidi L. Rehm, Michael Baudis, Stephen T. Sherry, Bartha Maria Knoppers, Dixie B. Baker, Paul Flicek

49Citations signalées, ce qui n’est pas une note de qualité

34Institutions déclarées

9Pays d’affiliation déclarés

Rattachement africain : ca, fi, gb, es, ch, us, be, au, jp. Niveau de preuve : code pays fourni par la source.

Le résumé fourni par la source

The Global Alliance for Genomics and Health (GA4GH) proposes a data access policy model-"registered access"-to increase and improve access to data requiring an agreement to basic terms and conditions, such as the use of DNA sequence and health data in research. A registered access policy would enable a range of categories of users to gain access, starting with researchers and clinical care professionals. It would also facilitate general use and reuse of data but within the bounds of consent restrictions and other ethical obligations. In piloting registered access with the Scientific Demonstration data sharing projects of GA4GH, we provide additional ethics, policy and technical guidance to facilitate the implementation of this access model in an international setting.

Ce résumé expose les affirmations des auteurs. BNTIC ne l’interprète pas comme une validation indépendante des résultats.

Le contrôle bibliographique ouvert

DOI retrouvé dans Crossref DOI retrouvé ; titre concordant.

Titre Crossref: Registered access: authorizing data access
Date Crossref: 02/08/2018
Éditeur: Springer Science and Business Media LLC
Type: journal-article

Ce recoupement confirme des métadonnées liées au DOI. Il ne confirme ni la méthode ni les conclusions de l’étude, et il ne compte pas comme une seconde source scientifique indépendante.

Les institutions déclarées

Montreal Neurological Institute and Hospital McGill Genome Centre McGill University CSC - IT Center for Science (Finland)European Bioinformatics Institute Universitat Pompeu Fabra Centre for Genomic Regulation SIB Swiss Institute of Bioinformatics Ontario Genomics Broad Institute Wellcome Sanger Institute KU Leuven National Human Genome Research Institute University of California, Santa Cruz University of Portland University of California San Diego Melbourne Genomics Health Alliance University of Leicester Microsoft (United States)Google (United States)Vanderbilt University Medical Center CRUK Lung Cancer Centre of Excellence University College London University of California, Berkeley ETH Zurich University of Toronto Hospital for Sick Children University of Ottawa Children's Hospital of Eastern Ontario Brigham and Women's Hospital Harvard University University of Zurich National Center for Biotechnology Information The University of Osaka

Une affiliation ne permet pas de déduire la nationalité d’un auteur.

Les sujets associés

Ethics in Clinical ResearchGenomics and Rare DiseasesBiomedical Ethics and Regulation

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