Registered access: authorizing data access.
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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. |
| Year of Publication | 2018
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| Journal | Eur J Hum Genet
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| Volume | 26
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| Issue | 12
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| Pages | 1721-1731
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| Date Published | 2018 12
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| ISSN | 1476-5438
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| DOI | 10.1038/s41431-018-0219-y
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| PubMed ID | 30069064
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| PubMed Central ID | PMC6244209
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| Grant list | U41 HG002371 / HG / NHGRI NIH HHS / United States
EP1-120608 / CIHR / Canada
201535/Z/16/Z / WT_ / Wellcome Trust / United Kingdom
EP1-120609 / CIHR / Canada
U41 HG007346 / HG / NHGRI NIH HHS / United States
CEE-151618 / CIHR / Canada
R00 HG008175 / HG / NHGRI NIH HHS / United States
201535 / WT_ / Wellcome Trust / United Kingdom
RM1 HG009034 / HG / NHGRI NIH HHS / United States
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