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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.
Keywords
Genetics(clinical), Genetics, MATCHMAKING

Citation

Please use this url to cite or link to this publication:

MLA
Dyke, Stephanie O. M., et al. “Registered Access : Authorizing Data Access.” EUROPEAN JOURNAL OF HUMAN GENETICS, vol. 26, no. 12, 2018, pp. 1721–31.
APA
Dyke, S. O. M., Linden, M., Lappalainen, I., De Argila, J. R., Carey, K., Lloyd, D., … Flicek, P. (2018). Registered access : authorizing data access. EUROPEAN JOURNAL OF HUMAN GENETICS, 26(12), 1721–1731.
Chicago author-date
Dyke, Stephanie O. M., Mikael Linden, Ilkka Lappalainen, Jordi Rambla De Argila, Knox Carey, David Lloyd, J. Dylan Spalding, et al. 2018. “Registered Access : Authorizing Data Access.” EUROPEAN JOURNAL OF HUMAN GENETICS 26 (12): 1721–31.
Chicago author-date (all authors)
Dyke, Stephanie O. M., 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, and Paul Flicek. 2018. “Registered Access : Authorizing Data Access.” EUROPEAN JOURNAL OF HUMAN GENETICS 26 (12): 1721–1731.
Vancouver
1.
Dyke SOM, Linden M, Lappalainen I, De Argila JR, Carey K, Lloyd D, et al. Registered access : authorizing data access. EUROPEAN JOURNAL OF HUMAN GENETICS. 2018;26(12):1721–31.
IEEE
[1]
S. O. M. Dyke et al., “Registered access : authorizing data access,” EUROPEAN JOURNAL OF HUMAN GENETICS, vol. 26, no. 12, pp. 1721–1731, 2018.
@article{8630034,
  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.},
  author       = {Dyke, Stephanie O. M. and Linden, Mikael and Lappalainen, Ilkka and De Argila, Jordi Rambla and Carey, Knox and Lloyd, David and Spalding, J. Dylan and Cabili, Moran N. and Kerry, Giselle and Foreman, Julia and Cutts, Tim and Shabani, Mahsa and Rodriguez, Laura L. and Haeussler, Maximilian and Walsh, Brian and Jiang, Xiaoqian and Wang, Shuang and Perrett, Daniel and Boughtwood, Tiffany and Matern, Andreas and Brookes, Anthony J. and Cupak, Miro and Fiume, Marc and Pandya, Ravi and Tulchinsky, Ilia and Scollen, Serena and Törnroos, Juha and Das, Samir and Evans, Alan C. and Malin, Bradley A. and Beck, Stephan and Brenner, Steven E. and Nyrönen, Tommi and Blomberg, Niklas and Firth, Helen V. and Hurles, Matthew and Philippakis, Anthony A. and Rätsch, Gunnar and Brudno, Michael and Boycott, Kym M. and Rehm, Heidi L. and Baudis, Michael and Sherry, Stephen T. and Kato, Kazuto and Knoppers, Bartha M. and Baker, Dixie and Flicek, Paul},
  issn         = {1018-4813},
  journal      = {EUROPEAN JOURNAL OF HUMAN GENETICS},
  keywords     = {Genetics(clinical),Genetics,MATCHMAKING},
  language     = {eng},
  number       = {12},
  pages        = {1721--1731},
  title        = {Registered access : authorizing data access},
  url          = {http://dx.doi.org/10.1038/s41431-018-0219-y},
  volume       = {26},
  year         = {2018},
}

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