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1		-XWiki.spieschnik
	1	+XWiki.abonard

Content

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287	287	(((
288	288	**Human subject data that can be shared on EBRAINS:**
289	289	// //
290		-
291		-// - Anonymized data//
292	292	// - Post-mortem data//
293		-// - Aggregated data //
294		-
	291	+// - Aggregated data//
	292	+// - Strongly pseudonymized or de-identified subject data//
	293	+// with a legal basis for sharing (e.g. Informed Consent)//
	294	+// //
295	295
296	296	(% class="small" %)
297	297	//If you have human data that does not qualify as any of the above,//
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299	299	)))
300	300
301	301
302		-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]].
	302	+Human subject data shared on EBRAINS must 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]].
303	303
304		-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.
	304	+Post-mortem and aggregated human data can be shared openly, given direct identifiers in the metadata are removed. Strongly pseudonymized and de-identified data can be shared via the Human Data Gateway (HDG).
305	305
306		-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 [[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]].
	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	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	+
308	308	----
309	309
310	310	== **The openMINDS metadata framework** ==