Journal
EUROPEAN JOURNAL OF HUMAN GENETICS
Volume 26, Issue 12, Pages 1721-1731Publisher
NATURE PUBLISHING GROUP
DOI: 10.1038/s41431-018-0219-y
Keywords
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Funding
- Canadian Institutes of Health Research [EP1-120608, EP1-120609, CEE-151618]
- Genome Quebec
- Genome Canada
- Government of Canada
- Ministere de l'Economie, Innovation et Exportation du Quebec (Can-SHARE grant) [141210]
- Canada Research Chair in Law and Medicine
- ELIXIR
- H2020 ELIXIR-EXCELERATE grant [676559]
- European Molecular Biology Laboratory
- Research Foundation Flanders (FWO)
- NIH/NHGRI [5U41HG002371-15, R00HG008175, U41 HG007346]
- National Institute for Health Research UCLH Biomedical Research Centre [BRC369/CN/SB/101310]
- [WT201535/Z/16/Z]
- NATIONAL HUMAN GENOME RESEARCH INSTITUTE [R00HG008175, U41HG002371, U41HG007346] Funding Source: NIH RePORTER
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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.
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