Secondary-use and research notice and opt-out

Version 1.2.0. Under the EU profile, EHDS-covered secondary use is included by default where a legal basis, permit and safeguards exist, with a simple and reversible right to opt out without giving a reason. Opting out does not limit essential SOSCHAIN functions.

Default inclusion does not authorise every research project. Each access requires a permitted purpose, legal basis and applicable permit, with information about the data user, data, duration, recipients, location and safeguards. Data are minimised and processed in a secure environment, anonymously where sufficient and pseudonymously only where necessary. They are not used for advertising, insurance, employment decisions, surveillance, re-identification or detriment to the person.

Individuals may opt out in the portal at any time and reverse that choice later. The opt-out prevents new identifiable inclusion under later permits and does not affect prior lawful use, anonymised results or a statutory public-interest exception with safeguards. Consent can also be withdrawn where a project specifically relies on it. Animal data are included by default under policy and authority over the animal while linked personal data remain protected. health-research and onehealth-research never enable break-glass. A jurisdiction-specific profile applies outside the EU; the European model is not presumed.