GenomicDataInfrastructure / standard-operating-procedures

A repository for managing standard operating procedure (SOP) resources for the GDI project.
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[SOP Request] Individuals Part of Datasets Withdrawing Their Consent for Data #23

Open dav-salgado opened 1 month ago

dav-salgado commented 1 month ago

SOP topics

Data & metadata management

SOP type

Node-specific

SOP Title

Individuals Part of Datasets Withdrawing Their Consent for Data

Detailed Description

  1. Receipt of Withdrawal of Consent 1.1. Receipt of a written or electronic notification of withdrawal of consent 1.2. The DPO (Data protection Officer) confirms the identity of the data subject 1.3. The DPO registers the withdrawal of consent in the Data management system of the GDI node.

  2. Data Identification 2.1. The data manager identifies all data records associated with the data subject. 2.2. Data may be identified through unique identifiers (e.g., ID number, email address) or other relevant criteria.

  3. Data Removal 3.1. The data manager securely deletes the identified data from the data repository 3.2. Data deletion methods should be in accordance with the organization’s data retention policy and applicable data protection regulations. 3.3. If complete deletion is not possible or desirable, data may be anonymized or pseudonymized to remove any personal identifiers.

  4. Documentation 4.1. The data manager documents the data removal process, including: 4.1.1. Date of receipt of the withdrawal of consent 4.1.2. Data subject’s identification information 4.1.3. Data sets affected 4.1.4. Methods used for data identification and removal 4.1.5. Confirmation of data deletion or anonymization

  5. Incident Management 5.1 In case of accidental data retention or unauthorized access to data after withdrawal of consent, an incident response plan should be activated.

  6. Notification 6.1 The DPO informs the data subject of the completion of the data removal process, as required by applicable regulations.

  7. EU operation level 7.1 GDI data aggregator should be informed with no delay of the removal of the data / dataset id to be remove from search applications

Motivation

To Comply with data protection regulations in term of data sharing for individuals

Existing Procedures or References

No response

Impact

No response

Stakeholders

Additional Information

No response

Requester GDI role

Yes

Requester GDI Node

No response

Confirmation