Journal article

Registered access: authorizing data access.

  • Dyke SOM Centre of Genomics and Policy, Faculty of Medicine, McGill University, Montreal, QC, Canada. stephanie.dyke@mcgill.ca.
  • Linden M CSC - IT Center for Science, Espoo, Finland.
  • Lappalainen I CSC - IT Center for Science, Espoo, Finland.
  • De Argila JR Centre for Genomic Regulation, Barcelona, Spain.
  • Carey K European Molecular Biology Laboratory, European Bioinformatics Institute, Hinxton, UK.
  • Lloyd D European Molecular Biology Laboratory, European Bioinformatics Institute, Hinxton, UK.
  • Spalding JD Broad Institute of MIT and Harvard, Cambridge, MA, USA.
  • Cabili MN European Molecular Biology Laboratory, European Bioinformatics Institute, Hinxton, UK.
  • Kerry G Wellcome Trust Sanger Institute, Wellcome Genome Campus, Hinxton, Cambridge, UK.
  • Foreman J Wellcome Trust Sanger Institute, Wellcome Genome Campus, Hinxton, Cambridge, UK.
  • Cutts T Center for Biomedical Ethics and Law, Department of Public Health and Primary Care, University of Leuven, Leuven, Belgium.
  • Shabani M National Human Genome Research Institute, NIH, Bethesda, MD, USA.
  • Rodriguez LL Genomics Institute, University of California at Santa Cruz, Santa Cruz, CA, USA.
  • Haeussler M OHSU, Portland, OR, USA.
  • Walsh B Department of Biomedical Informatics, UC San Diego, La Jolla, CA, USA.
  • Jiang X Department of Biomedical Informatics, UC San Diego, La Jolla, CA, USA.
  • Wang S Wellcome Trust Sanger Institute, Wellcome Genome Campus, Hinxton, Cambridge, UK.
  • Perrett D Australian Genomics Health Alliance, 50 Flemington Road, Parkville, VIC, 3052, Australia.
  • Boughtwood T Bioreference Laboratories, Inc., Elmwood Park, NJ, USA.
  • Matern A Department of Genetics and Genome Biology, University of Leicester, Leicester, UK.
  • Brookes AJ DNAstack, Toronto, ON, Canada.
  • Cupak M DNAstack, Toronto, ON, Canada.
  • Fiume M Microsoft, Redmond, WA, USA.
  • Pandya R Google, Mountain View, CA, USA.
  • Tulchinsky I ELIXIR Hub, Wellcome Genome Campus, Hinxton, Cambridge, UK.
  • Scollen S CSC - IT Center for Science, Espoo, Finland.
  • Törnroos J McGill Centre for Integrative Neurosciences, Montreal Neurological Institute, McGill University, Montreal, QC, Canada.
  • Das S McGill Centre for Integrative Neurosciences, Montreal Neurological Institute, McGill University, Montreal, QC, Canada.
  • Evans AC Vanderbilt University Medical Center, Nashville, TN, USA.
  • Malin BA UCL Cancer Institute, University College London, London, UK.
  • Beck S Department of Plant & Microbial Biology, University of California, Berkeley, CA, USA.
  • Brenner SE CSC - IT Center for Science, Espoo, Finland.
  • Nyrönen T ELIXIR Hub, Wellcome Genome Campus, Hinxton, Cambridge, UK.
  • Blomberg N Wellcome Trust Sanger Institute, Wellcome Genome Campus, Hinxton, Cambridge, UK.
  • Firth HV Wellcome Trust Sanger Institute, Wellcome Genome Campus, Hinxton, Cambridge, UK.
  • Hurles M Broad Institute of MIT and Harvard, Cambridge, MA, USA.
  • Philippakis AA Department of Computer Science, Biomedical Informatics, ETH Zurich, Zurich, Switzerland.
  • Rätsch G Department of Computer Science, University of Toronto, Toronto, ON, Canada.
  • Brudno M Children's Hospital of Eastern Ontario Research Institute, University of Ottawa, Ottawa, ON, Canada.
  • Boycott KM Broad Institute of MIT and Harvard, Cambridge, MA, USA.
  • Rehm HL University of Zurich & Swiss Institute of Bioinformatics, Zurich, Switzerland.
  • Baudis M National Centre for Biotechnology Information, US National Library of Medicine, Bethesda, MD, USA.
  • Sherry ST Department of Biomedical Ethics and Public Policy, Graduate School of Medicine, Osaka University, Osaka, Japan.
  • Kato K Centre of Genomics and Policy, Faculty of Medicine, McGill University, Montreal, QC, Canada.
  • Knoppers BM Martin, Blanck & Associates, Alexandria, VA, USA.
  • Baker D European Molecular Biology Laboratory, European Bioinformatics Institute, Hinxton, UK.
  • Flicek P
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  • 2018-08-03
Published in:
  • European journal of human genetics : EJHG. - 2018
English 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.
Language
  • English
Open access status
hybrid
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Persistent URL
https://sonar.ch/global/documents/199643
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