Changes for page data-curation-copy

Last modified by eapapp on 2023/07/04 16:46

From version 128.1
edited by ingrreit
on 2023/05/23 17:57
Change comment: There is no comment for this version
To version 127.1
edited by ingrreit
on 2023/05/09 12:46
Change comment: There is no comment for this version

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99 99  
100 100  ==== **Sharing human data ** ====
101 101  
102 +We must ensure data shared on EBRAINS comply with [[GDPR >>https://gdpr-info.eu/]]and [[EU directives>>https://eur-lex.europa.eu/legal-content/EN/TXT/?uri=celex%3A32010L0063]]. The information we need to assess this is collected via our [[Ethics and Regulatory Compliance Survey>>https://nettskjema.no/a/224765]].
103 +
102 102  (% class="box floatinginfobox" %)
103 103  (((
104 104  For **Human subject data**, the data must be //either//
105 105  
106 106  - Post-mortem data
109 +
107 107  - Aggregated data
111 +
108 108  - Pseudonymized subject data with a legal basis for sharing (e.g. Informed Consent)
109 109  
110 110  (% class="small" %)//If you have human data that do not classify as any of the above, please get in touch and we will clarify the available options. //
111 111  )))
112 112  
113 -We must ensure data shared on EBRAINS comply with [[GDPR >>https://gdpr-info.eu/]]and [[EU directives>>https://eur-lex.europa.eu/legal-content/EN/TXT/?uri=celex%3A32010L0063]]. The information we need to assess this is collected via our [[Ethics and Regulatory Compliance Survey>>https://nettskjema.no/a/224765]].
117 +Pseudonymized data is shared via the Human Data Gateway (HDG) due to GDPR regulations. The HDG adds an authentication layer to the data.
114 114  
115 -Post-mortem and aggregated human data can be shared openly. Pseudonymized data is shared via the Human Data Gateway (HDG) due to GDPR regulations. The HDG adds an authentication layer to the data.
116 -
117 117  **Data users** must request access to the data (via their EBRAINS account) and will receive access provided they actively accept the [[EBRAINS Access Policy>>https://ebrains.eu/terms#access-policy]], the [[EBRAINS General Terms of Use>>https://ebrains.eu/terms#general-terms-of-use]], and the [[EBRAINS Data Use Agreement>>https://ebrains.eu/terms#data-use-agreement]]. The account holder also have to accept that information about their request and access to specific data under HDG is being tracked and stored.
118 118  \\**Data owners** must be aware that sharing under the HDG affects the legal responsibilities for the data. They must agree to joint control of the data (see the [[Data Provision Protocol v1>>url:https://strapi-prod.sos-ch-dk-2.exo.io/EBRAINS_Data_Provision_Protocol_dfe0dcb104.pdf]], section 1.4 - 1.5) and the Data Protection Officers of the responsible institutions must have accepted that the data can be shared under HDG.
119 119  \\The Human Data Gateway (HDG) was introduced in February 2021 and developed across multiple teams in the HBP. The initiative to create the service and the initial design originated from EBRAINS Curation in close collaboration with the Data compliance team and the HBP Data Governance Working Group. HDG is a response to the needs of multiple data providers who are bringing data of human origin to EBRAINS. HDG covers the sharing of a limited range of data of human origin, i.e., data without direct identifiers and with very few indirect identifiers (strongly pseudonymized, de-identified). It is an extension of the existing services and does not replace the future EBRAINS Service for sensitive data (planned for 2024) which is outside the domain of the current EBRAINS Data and Knowledge services.
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204 204  )))
205 205  
206 206  
207 -\\**Located in Germany:**
209 +
210 +**Located in Germany:**
208 208  
209 209  [[image:My project (2).jpg||height="209" width="167"]]
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