Registered access: authorizing data access
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- dc.contributor.author Dyke, Stephanie O. M.
- dc.contributor.author De Argila, Jordi Rambla
- dc.contributor.author Flicek, Paul
- dc.date.accessioned 2019-11-15T08:12:47Z
- dc.date.available 2019-11-15T08:12:47Z
- dc.date.issued 2018
- dc.description.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.
- dc.description.sponsorship SOMD is supported by the Canadian Institutes of Health Research (EP1-120608; EP1-120609; CEE-151618), Genome Quebec, Genome Canada, the Government of Canada, the Ministère de l’Économie, Innovation et Exportation du Québec (Can-SHARE grant 141210), and the Canada Research Chair in Law and Medicine. ML, IL, JT, and TN are supported by the ELIXIR, the research infrastructure for life-science data, and the H2020 ELIXIR-EXCELERATE grant 676559. IL and GK are supported by the European Molecular Biology Laboratory; MS by Research Foundation Flanders (FWO); MH by NIH/NHGRI 5U41HG002371-15; SW by NIH/NHGRI R00HG008175; S Beck by the National Institute for Health Research UCLH Biomedical Research Centre (BRC369/CN/SB/101310); S Brenner by NIH/NHGRI U41 HG007346; BMK by the Canada Research Chair in Law and Medicine; and PF by WT201535/Z/16/Z and the European Molecular Biology Laboratory.
- dc.format.mimetype application/pdf
- dc.identifier.citation Dyke SOM, Linden M, Lappalainen I, De Argila JR, Carey K, Lloyd D et al. Registered access: authorizing data access. Eur J Hum Genet. 2018;26(12):1721-31. DOI: 10.1038/s41431-018-0219-y
- dc.identifier.doi http://dx.doi.org/10.1038/s41431-018-0219-y
- dc.identifier.issn 1018-4813
- dc.identifier.uri http://hdl.handle.net/10230/42859
- dc.language.iso eng
- dc.publisher Nature Research
- dc.relation.ispartof European Journal of Human Genetics. 2018;26(12):1721-31
- dc.relation.projectID info:eu-repo/grantAgreement/EC/H2020/676559
- dc.rights © 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/.
- dc.rights.accessRights info:eu-repo/semantics/openAccess
- dc.rights.uri http://creativecommons.org/licenses/by/4.0/
- dc.subject.keyword Genetics research
- dc.subject.keyword Personalized medicine
- dc.title Registered access: authorizing data access
- dc.type info:eu-repo/semantics/article
- dc.type.version info:eu-repo/semantics/publishedVersion