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Registered access: authorizing data access
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 enabl...
| Autores principales: | , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , |
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| Formato: | Online Artículo Texto |
| Lenguaje: | English |
| Publicado: |
Springer International Publishing
2018
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| Materias: | |
| Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6244209/ https://www.ncbi.nlm.nih.gov/pubmed/30069064 http://dx.doi.org/10.1038/s41431-018-0219-y |
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| author | Dyke, Stephanie O. M. Linden, Mikael Lappalainen, Ilkka De Argila, Jordi Rambla Carey, Knox Lloyd, David Spalding, J. Dylan Cabili, Moran N. Kerry, Giselle Foreman, Julia Cutts, Tim Shabani, Mahsa Rodriguez, Laura L. Haeussler, Maximilian Walsh, Brian Jiang, Xiaoqian Wang, Shuang Perrett, Daniel Boughtwood, Tiffany Matern, Andreas Brookes, Anthony J. Cupak, Miro Fiume, Marc Pandya, Ravi Tulchinsky, Ilia Scollen, Serena Törnroos, Juha Das, Samir Evans, Alan C. Malin, Bradley A. Beck, Stephan Brenner, Steven E. Nyrönen, Tommi Blomberg, Niklas Firth, Helen V. Hurles, Matthew Philippakis, Anthony A. Rätsch, Gunnar Brudno, Michael Boycott, Kym M. Rehm, Heidi L. Baudis, Michael Sherry, Stephen T. Kato, Kazuto Knoppers, Bartha M. Baker, Dixie Flicek, Paul |
| author_facet | Dyke, Stephanie O. M. Linden, Mikael Lappalainen, Ilkka De Argila, Jordi Rambla Carey, Knox Lloyd, David Spalding, J. Dylan Cabili, Moran N. Kerry, Giselle Foreman, Julia Cutts, Tim Shabani, Mahsa Rodriguez, Laura L. Haeussler, Maximilian Walsh, Brian Jiang, Xiaoqian Wang, Shuang Perrett, Daniel Boughtwood, Tiffany Matern, Andreas Brookes, Anthony J. Cupak, Miro Fiume, Marc Pandya, Ravi Tulchinsky, Ilia Scollen, Serena Törnroos, Juha Das, Samir Evans, Alan C. Malin, Bradley A. Beck, Stephan Brenner, Steven E. Nyrönen, Tommi Blomberg, Niklas Firth, Helen V. Hurles, Matthew Philippakis, Anthony A. Rätsch, Gunnar Brudno, Michael Boycott, Kym M. Rehm, Heidi L. Baudis, Michael Sherry, Stephen T. Kato, Kazuto Knoppers, Bartha M. Baker, Dixie Flicek, Paul |
| author_sort | Dyke, Stephanie O. M. |
| collection | PubMed |
| description | 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. |
| format | Online Article Text |
| id | pubmed-6244209 |
| institution | National Center for Biotechnology Information |
| language | English |
| publishDate | 2018 |
| publisher | Springer International Publishing |
| record_format | MEDLINE/PubMed |
| spelling | pubmed-62442092018-11-21 Registered access: authorizing data access Dyke, Stephanie O. M. Linden, Mikael Lappalainen, Ilkka De Argila, Jordi Rambla Carey, Knox Lloyd, David Spalding, J. Dylan Cabili, Moran N. Kerry, Giselle Foreman, Julia Cutts, Tim Shabani, Mahsa Rodriguez, Laura L. Haeussler, Maximilian Walsh, Brian Jiang, Xiaoqian Wang, Shuang Perrett, Daniel Boughtwood, Tiffany Matern, Andreas Brookes, Anthony J. Cupak, Miro Fiume, Marc Pandya, Ravi Tulchinsky, Ilia Scollen, Serena Törnroos, Juha Das, Samir Evans, Alan C. Malin, Bradley A. Beck, Stephan Brenner, Steven E. Nyrönen, Tommi Blomberg, Niklas Firth, Helen V. Hurles, Matthew Philippakis, Anthony A. Rätsch, Gunnar Brudno, Michael Boycott, Kym M. Rehm, Heidi L. Baudis, Michael Sherry, Stephen T. Kato, Kazuto Knoppers, Bartha M. Baker, Dixie Flicek, Paul Eur J Hum Genet Article 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. Springer International Publishing 2018-08-02 2018-12 /pmc/articles/PMC6244209/ /pubmed/30069064 http://dx.doi.org/10.1038/s41431-018-0219-y Text en © The Author(s) 2018 Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons license, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons license and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this license, visit http://creativecommons.org/licenses/by/4.0/. |
| spellingShingle | Article Dyke, Stephanie O. M. Linden, Mikael Lappalainen, Ilkka De Argila, Jordi Rambla Carey, Knox Lloyd, David Spalding, J. Dylan Cabili, Moran N. Kerry, Giselle Foreman, Julia Cutts, Tim Shabani, Mahsa Rodriguez, Laura L. Haeussler, Maximilian Walsh, Brian Jiang, Xiaoqian Wang, Shuang Perrett, Daniel Boughtwood, Tiffany Matern, Andreas Brookes, Anthony J. Cupak, Miro Fiume, Marc Pandya, Ravi Tulchinsky, Ilia Scollen, Serena Törnroos, Juha Das, Samir Evans, Alan C. Malin, Bradley A. Beck, Stephan Brenner, Steven E. Nyrönen, Tommi Blomberg, Niklas Firth, Helen V. Hurles, Matthew Philippakis, Anthony A. Rätsch, Gunnar Brudno, Michael Boycott, Kym M. Rehm, Heidi L. Baudis, Michael Sherry, Stephen T. Kato, Kazuto Knoppers, Bartha M. Baker, Dixie Flicek, Paul Registered access: authorizing data access |
| title | Registered access: authorizing data access |
| title_full | Registered access: authorizing data access |
| title_fullStr | Registered access: authorizing data access |
| title_full_unstemmed | Registered access: authorizing data access |
| title_short | Registered access: authorizing data access |
| title_sort | registered access: authorizing data access |
| topic | Article |
| url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6244209/ https://www.ncbi.nlm.nih.gov/pubmed/30069064 http://dx.doi.org/10.1038/s41431-018-0219-y |
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