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# Data Access | ||
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Data access for Gray Foundation corresponds to the general [data access types described for the Synapse platform](https://help.synapse.org/docs/Data-Access-Types.2014904611.html). | ||
The data access for Gray Foundation aligns with the general data access types described for the Synapse platform. You can find more details about these access types [here](https://help.synapse.org/docs/Data-Access-Types.2014904611.html). | ||
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## Data Access Tags in the Portal | ||
## Data Access Tags in the Portal | ||
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<Callout type="info" emoji="ℹ️"> | ||
This is a future visual labeling scheme to help represent access in a more user-friendly manner in the portal. | ||
This is an upcoming visual labeling system designed to represent access in a more user-friendly manner within the portal. | ||
</Callout> | ||
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<Steps> | ||
### Phase 1 Datasets | ||
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##### "PRIVATE" | ||
<Image src="/badge_phase1_PRIVATE.svg" alt="private data access" width={160} height={30} /> | ||
Phase 1 datasets will likely not appear in the portal at all. | ||
If they do, the pink "PRIVATE" tag will indicate that this data exists on Synapse, but is likely still under compilation/analysis, and there is no interest in sharing it at the moment. Do not contact the team regarding the data. | ||
Phase 1 datasets will most likely not be visible in the portal. If they do appear, the pink "PRIVATE" tag will indicate that the data exists on Synapse but is still undergoing compilation/analysis. At the moment, there is no intention to share this data, so please refrain from contacting the team regarding its availability. | ||
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### Phase 2 Datasets | ||
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##### "COLLABORATIVE ONLY" | ||
<Image src="/badge_phase2_COLLAB.svg" alt="collaborative data access" width={270} height={30} /> | ||
Phase 2 datasets MAY appear in the portal, but will be tagged with "COLLABORATIVE ACCESS ONLY". | ||
Researchers interested in collaboration **will have to request access through contacting the Team PI**. | ||
- Data is private and downloable only through the individuals or teams explicitly granted with those permissions. | ||
- Admins (PIs and Data Leads) for the team's repository can grant view or download access by adding individuals or teams to the folder or project. This allows data to be shared for collaboration without moving the data to Phase 3. | ||
- In conversational context, this data might also be referred to as "under embargo". | ||
Phase 2 datasets may be visible in the portal but will be labeled as "COLLABORATIVE ACCESS ONLY". Researchers interested in collaboration will need to request access by contacting the Team PI. | ||
- Data is private and can only be downloaded by individuals or teams explicitly granted permission. | ||
- Admins (PIs and Data Leads) for the team's repository can grant view or download access by adding individuals or teams to the folder or project. This allows data to be shared for collaboration without moving it to Phase 3. | ||
- In conversation, this data may also be referred to as being "under embargo". | ||
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### Phase 3 Datasets | ||
### Phase 3 Datasets | ||
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Phase 3 datasets are often data released with or after publication. However, there might still be conditions placed on access. | ||
Within Phase 3, data has several access classes: | ||
Phase 3 datasets often consist of data released concurrently with or after publication, although certain access conditions may still apply. Within Phase 3, data is classified into several access categories: | ||
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##### "CONTROLLED ACCESS" | ||
<Image src="/badge_phase3_CONTROLLED.svg" alt="controlled data access" width={200} height={30} /> | ||
- Registered Synapse users can download this data as long as they fulfill additional actions such as accepting Conditions of Use, submitting a statement, or getting an approval from governance. | ||
- Since these controls are implemented through a different data access layer, for _certain_ controls, once they are applied, even individuals on the Access Control List with download permissions will need to complete the required action to download data. | ||
- This is usually applicable for raw sequencing data. | ||
- Registered Synapse users can download this data after fulfilling additional requirements such as accepting Conditions of Use, submitting a statement, or obtaining approval from governance. | ||
- For certain controls, even individuals on the Access Control List with download permissions will need to complete the required action to download data, as these controls are implemented through a different data access layer. | ||
- This typically applies to raw sequencing data. | ||
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##### "PUBLIC" | ||
<Image src="/badge_phase3_PUBLIC.svg" alt="public data access" width={140} height={30} /> | ||
- Anyone on the web can view the data, but only registered Synapse users can download this data. Data can be downloaded without any restrictions or additional steps required. | ||
- This is usually applicable for processed data such as summarized gene expression and cell and tissue images. | ||
- The data can be viewed by anyone on the web, but only registered Synapse users can download it. There are no restrictions or additional steps required for downloading. | ||
- This usually applies to processed data such as summarized gene expression and cell and tissue images. | ||
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##### "OPEN" | ||
<Image src="/badge_phase3_OPEN.svg" alt="open data access" width={130} height={30} /> | ||
- Anyone on the web can view and download this data, no account needed. | ||
- This is usually applicable for metadata. | ||
- Anyone on the web can view and download this data without requiring an account. | ||
- This usually applies to metadata. | ||
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</Steps> | ||
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For more information, reach out to our governance analysis team at [email protected]. | ||
For more information, please refer to the policies on our [Data Access](/help/data-access) page or contact our governance analysis team at [email protected]. | ||
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### See Also | ||
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For specific information regarding synapse governance - see https://help.synapse.org/docs/Synapse-Governance.2004255211.html | ||
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For specific information regarding Synapse governance, please visit https://help.synapse.org/docs/Synapse-Governance.2004255211.html. |
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import { Steps } from 'nextra-theme-docs' | ||
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# What is Governance? | ||
# Understanding Governance | ||
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Data governance is the management of data access and availability. | ||
Data governance involves managing data access and availability effectively. | ||
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Data deposited in the Synapse platform have access control features implemented by the platform. | ||
Data sharing settings are negotiated by the sharing agreements between Sage Bionetworks and research teams. | ||
Data is not made public until the project teams agree to release the data. | ||
When it comes to data deposited in the Synapse platform, access control features are implemented to ensure secure management. | ||
Data sharing settings are determined through sharing agreements established between Sage Bionetworks and research teams. | ||
Data remains private until the project teams agree to release it. | ||
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## Data Sharing Phases for Gray Foundation | ||
## Phases of Data Sharing for Gray Foundation | ||
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Data will be shared in three phases: | ||
Data sharing occurs in three distinct phases: | ||
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<Steps> | ||
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### Private Phase | ||
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Data is accessible only the by Contributor and Contributor-designated individuals. This is the default configuration unless decided otherwise by the grant (e.g. certain pilot projects start in the Collaborative Sharing Phase). | ||
During this phase, data is exclusively accessible to the Contributor and individuals designated by the Contributor. This configuration serves as the default setting unless specified otherwise by the grant. For instance, certain pilot projects may start directly in the Collaborative Sharing Phase. | ||
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### Collaborative Sharing Phase | ||
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Curated Data is accessible by the “in network” investigators. | ||
In the Collaborative Sharing Phase, curated data becomes accessible to investigators within the network. | ||
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### Public Sharing Phase | ||
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Data is accessible by the greater research community (with appropriate controls). | ||
In the Public Sharing Phase, data is made available to the broader research community while maintaining appropriate controls. | ||
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</Steps> | ||
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## For Contributing Teams -- What the Process Looks Like | ||
## Process for Contributing Teams | ||
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Much governance activity takes place before data is even generated or deposited into Synapse. | ||
Via the initial Governance Working Group, negotiations with each institution, and more granular [data sharing plans](/onboarding/dsp-template) requested from data contributors, the DCC collects the agreements and information needed for tailoring governance and that answer some of the below questions: | ||
Significant governance activities occur even before data is generated or deposited into Synapse. | ||
Through the initial Governance Working Group, negotiations with each institution, and detailed data sharing plans requested from data contributors (available at [/onboarding/dsp-template](/onboarding/dsp-template)), the Data Coordination Center (DCC) collects the necessary agreements and information to tailor governance measures. These efforts address several key questions, such as: | ||
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- What are the applicable policies given the data's territorial origins? (e.g. data from Europe fall under GDPR jurisdiction) | ||
- What are the applicable policies given the data's institutional origins? | ||
- What are the conditions given the data contributors' preferences? | ||
- What are the relevant policies based on the territorial origins of the data? (For example, data from Europe falls under the jurisdiction of GDPR.) | ||
- What are the relevant policies based on the institutional origins of the data? | ||
- What conditions are specified according to the preferences of data contributors? | ||
- Does the data contain sensitive information? | ||
- What were the patient consents for this data, for human data? | ||
- Is the data provided de-identified according to HIPAA, for human data? | ||
- What were the patient consents obtained for this human data? | ||
- Is the data provided in a de-identified format according to HIPAA guidelines for human data? | ||
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### Governance lifecycle chart | ||
<iframe allowfullscreen | ||
frameborder="0" | ||
width="100%" | ||
height="500px" | ||
src="https://lucid.app/documents/embedded/b3092978-9ae9-46cc-812b-5c26c5fb4bf7" id="_-N2BoCYE4j1"> | ||
</iframe> | ||
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## For Data Re-users | ||
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For researchers hoping to understand governance so that they can re-use the data, please see the next [Data Access section](data-access). | ||
For researchers hoping to understand governance so that they can re-use the data, please see the next [Data Access section](data-access). |
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## Account Setup | ||
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1. Please review the [account types here](https://help.synapse.org/docs/Synapse-User-Account-Types.2007072795.html). | ||
2. In most cases, you will need to be a **Certified User**, so make sure you complete that step. | ||
3. Once you have your account, let the DCC know so a team-specific invite can be sent. | ||
4. You must accept the invitation for a Team invite. This requires following an emailed link and accepting the invitation on a Synapse team page. | ||
1. Please familiarize yourself with the different [account types available](https://help.synapse.org/docs/Synapse-User-Account-Types.2007072795.html). | ||
2. In most cases, it is necessary to become a **Certified User** before proceeding. Make sure you complete this step. | ||
3. After creating your account, please inform the DCC so that a team-specific invitation can be sent to you. | ||
4. To join a team, you must accept the invitation by clicking on the link provided in the email and following the instructions on the Synapse team page. |
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