Registered access: authorizing data access

Stephanie O M Dyke; Mikael Linden; Ilkka Lappalainen; Jordi Rambla De Argila; Knox Carey; David Lloyd; J Dylan Spalding; Moran N Cabili; Giselle Kerry; Julia Foreman; Tim Cutts; Mahsa Shabani; Laura L 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 A Malin; Stephan Beck; Steven E Brenner; Tommi Nyrönen; Niklas Blomberg; Helen V Firth; Matthew Hurles; Anthony A Philippakis; Gunnar Rätsch; Michael Brudno; Kym M Boycott; Heidi L Rehm; Michael Baudis; Stephen T Sherry; Kazuto Kato; Bartha M Knoppers; Dixie Baker; Paul Flicek

doi:10.1038/s41431-018-0219-y

Registered access: authorizing data access

Eur J Hum Genet. 2018 Dec;26(12):1721-1731. doi: 10.1038/s41431-018-0219-y. Epub 2018 Aug 2.

Authors

Stephanie O M Dyke^{1

2}, Mikael Linden^{3

4}, Ilkka Lappalainen^{3

4

5}, Jordi Rambla De Argila^{6

7}, Knox Carey, David Lloyd^{5

8}, J Dylan Spalding⁵, Moran N Cabili⁹, Giselle Kerry⁵, Julia Foreman¹⁰, Tim Cutts¹⁰, Mahsa Shabani¹¹, Laura L Rodriguez¹², Maximilian Haeussler¹³, Brian Walsh¹⁴, Xiaoqian Jiang¹⁵, Shuang Wang¹⁵, Daniel Perrett¹⁰, Tiffany Boughtwood¹⁶, Andreas Matern¹⁷, Anthony J Brookes¹⁸, Miro Cupak¹⁹, Marc Fiume¹⁹, Ravi Pandya²⁰, Ilia Tulchinsky²¹, Serena Scollen⁴, Juha Törnroos³, Samir Das²², Alan C Evans²², Bradley A Malin²³, Stephan Beck²⁴, Steven E Brenner²⁵, Tommi Nyrönen^{3

26}, Niklas Blomberg⁴, Helen V Firth¹⁰, Matthew Hurles¹⁰, Anthony A Philippakis⁹, Gunnar Rätsch²⁷, Michael Brudno^{28

29}, Kym M Boycott³⁰, Heidi L Rehm^{9

31}, Michael Baudis³², Stephen T Sherry³³, Kazuto Kato³⁴, Bartha M Knoppers³⁵, Dixie Baker³⁶, Paul Flicek⁵

Affiliations

¹ Centre of Genomics and Policy, Faculty of Medicine, McGill University, Montreal, QC, Canada. stephanie.dyke@mcgill.ca.
² Montreal Neurological Institute, Faculty of Medicine, McGill University, Montreal, QC, Canada. stephanie.dyke@mcgill.ca.
³ CSC - IT Center for Science, Espoo, Finland.
⁴ ELIXIR Hub, Wellcome Genome Campus, Hinxton, Cambridge, UK.
⁵ European Molecular Biology Laboratory, European Bioinformatics Institute, Hinxton, UK.
⁶ Centre for Genomic Regulation, Barcelona, Spain.
⁷ Universitat Pompeu Fabra, Barcelona, Spain.
⁸ The Global Alliance for Genomics and Health, MaRS Centre, West Tower, 661 University Avenue, Suite 510, Toronto, M5G 0A3, ON, Canada.
⁹ Broad Institute of MIT and Harvard, Cambridge, MA, USA.
¹⁰ Wellcome Trust Sanger Institute, Wellcome Genome Campus, Hinxton, Cambridge, UK.
¹¹ Center for Biomedical Ethics and Law, Department of Public Health and Primary Care, University of Leuven, Leuven, Belgium.
¹² National Human Genome Research Institute, NIH, Bethesda, MD, USA.
¹³ Genomics Institute, University of California at Santa Cruz, Santa Cruz, CA, USA.
¹⁴ OHSU, Portland, OR, USA.
¹⁵ Department of Biomedical Informatics, UC San Diego, La Jolla, CA, USA.
¹⁶ Australian Genomics Health Alliance, 50 Flemington Road, Parkville, VIC, 3052, Australia.
¹⁷ Bioreference Laboratories, Inc., Elmwood Park, NJ, USA.
¹⁸ Department of Genetics and Genome Biology, University of Leicester, Leicester, UK.
¹⁹ DNAstack, Toronto, ON, Canada.
²⁰ Microsoft, Redmond, WA, USA.
²¹ Google, Mountain View, CA, USA.
²² McGill Centre for Integrative Neurosciences, Montreal Neurological Institute, McGill University, Montreal, QC, Canada.
²³ Vanderbilt University Medical Center, Nashville, TN, USA.
²⁴ UCL Cancer Institute, University College London, London, UK.
²⁵ Department of Plant & Microbial Biology, University of California, Berkeley, CA, USA.
²⁶ ELIXIR Compute Platform, ELIXIR, Wellcome Genome Campus, Hinxton, Cambridge, UK.
²⁷ Department of Computer Science, Biomedical Informatics, ETH Zurich, Zurich, Switzerland.
²⁸ Department of Computer Science, University of Toronto, Toronto, ON, Canada.
²⁹ Centre for Computational Medicine, Hospital for Sick Children, Toronto, ON, Canada.
³⁰ Children's Hospital of Eastern Ontario Research Institute, University of Ottawa, Ottawa, ON, Canada.
³¹ Department of Pathology, Brigham & Women's Hospital & Harvard Medical School, Boston, MA, USA.
³² University of Zurich & Swiss Institute of Bioinformatics, Zurich, Switzerland.
³³ National Centre for Biotechnology Information, US National Library of Medicine, Bethesda, MD, USA.
³⁴ Department of Biomedical Ethics and Public Policy, Graduate School of Medicine, Osaka University, Osaka, Japan.
³⁵ Centre of Genomics and Policy, Faculty of Medicine, McGill University, Montreal, QC, Canada.
³⁶ Martin, Blanck & Associates, Alexandria, VA, USA.

Abstract

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.

Publication types

Research Support, N.I.H., Extramural
Research Support, Non-U.S. Gov't

MeSH terms

Access to Information*
Genetics, Medical / ethics
Genetics, Medical / legislation & jurisprudence
Genetics, Medical / standards*
Genomics / ethics
Genomics / legislation & jurisprudence
Genomics / standards*
Humans
Information Dissemination*
Licensure
Practice Guidelines as Topic

Abstract

Publication types

MeSH terms

Grants and funding