Changes for page Data Curation
Last modified by spieschnik on 2025/11/17 10:45
From version 230.1
edited by abonard
on 2025/06/03 10:55
on 2025/06/03 10:55
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To version 233.1
edited by spieschnik
on 2025/11/17 10:45
on 2025/11/17 10:45
Change comment:
There is no comment for this version
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... ... @@ -286,29 +286,21 @@ 286 286 (% class="box floatinginfobox" %) 287 287 ((( 288 288 **Human subject data that can be shared on EBRAINS:** 289 -// // 289 +// - Anonymized data// 290 290 // - Post-mortem data// 291 -// - Aggregated data// 292 -// - Strongly pseudonymized or de-identified subject data// 293 -// with a legal basis for sharing (e.g. Informed Consent)// 294 -// // 291 +// - Aggregated data // 292 + 295 295 296 -(% class="small" %) 297 297 //If you have human data that does not qualify as any of the above,// 298 298 //please [[get in touch>>https://www.ebrains.eu/contact/]] and we will clarify the available options.// 299 299 ))) 300 300 298 +Human subject data shared on EBRAINS must comply with the [[GDPR >>https://gdpr-info.eu/]]and relevant [[EU directives>>https://eur-lex.europa.eu/legal-content/EN/TXT/?uri=celex%3A32010L0063]]. The necessary information to assess this compliance is collected via our [[curation request form>>https://www.ebrains.eu/tools/ebrains-curation-request-form]]. 301 301 302 - Human subject data shared onEBRAINSmust comply with [[GDPR >>https://gdpr-info.eu/]]and[[EU directives>>https://eur-lex.europa.eu/legal-content/EN/TXT/?uri=celex%3A32010L0063]].Theinformationweneedtoassessthisiscollectedviaour[[Ethicsand RegulatoryComplianceSurvey>>https://nettskjema.no/a/224765]].300 +Anonymous data, including post-mortem and aggregated data, can be shared openly on the condition that subject identifiers are removed from the metadata. Such identifiers must not be shared with the curation team when submitting metadata for curation. 303 303 304 - Post-mortemand aggregatedhuman data can be shared openly,givendirectidentifiers in themetadataareremoved.Stronglypseudonymizedandde-identifieddata canbesharedviatheHumanDataGateway (HDG).302 +Identifiable or sensitive data are shared under restricted access and cannot be stored on the EBRAINS data storage. While the dataset as a whole is discoverable through anonymous metadata published on EBRAINS, access to the actual data files is managed via the [[EBRAINS Trusted Research Environments>>https://wiki.ebrains.eu/bin/view/Collabs/trusted-research-environments]]. The data custodian is required to comply with the[[ EBRAINS special terms for restricted access datasets>>https://drive.ebrains.eu/f/5a9bb3bd048446ae8ef6/?dl=1]]. 305 305 306 -The Human Data Gateway (HDG) was introduced in February 2021 as a response to the needs of multiple data providers who are bringing human subject data to EBRAINS. HDG covers the sharing of strongly pseudonymized or de-identified data, a limited range human subject data without direct identifiers and with very few indirect identifiers. 307 - 308 -The HDG adds an an authentication layer on top of the data. This means that **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. **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. 309 - 310 -The HDG 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. 311 - 312 312 ---- 313 313 314 314 == **The openMINDS metadata framework** ==