Data altruism

The DGA defines data altruism as a voluntary and non-commercial sharing of data on the basis of consent given by natural or legal persons for objectives of general interest such as health care, combating climate change, improving mobility, facilitating the development, production and dissemination of official statistics, improving the provision of public services, public policy making or scientific research objectives of general interest. A common European data altruism consent form shall be established by an implementing act of the European Commission.

Entities that will continue to work with the data collected in this way have the possibility to register as a "Data Altruism Organisation recognised in the Union" and use a common European logo, after meeting the conditions set out in the DGA. The Union register of recognised data altruism organisations is available here. CTU also maintains a national public register of recognised data altruism organisations.

The key requirements for recognized data altruism organizations:

  • Obligation to use data only for the objectives of general interest for which the data subject or data holder has authorised the processing,
  • It must be a legal person established pursuant to national law to meet objectives of general interest,
  • It must operate on a not-for-profit basis and be legally independent from any entity that operates on a for-profit basis,
  • It must carry out its data altruism activities through a structure that is functionally separate from its other activities,
  • It shall take measures to ensure an adequate level of security for the storage and processing of the data it collects.

Obligations of recognised organisations for data altruism towards CTU

  • Obligation to apply for registration under Article 19(1) of the DGA. The application must include:
  1. name of the entity;
  2. entity’s legal status, form and, where the entity is registered in a public national register, registration number;
  3. statutes of the entity, where appropriate;
  4. entity's sources of income;
  5. address of the entity’s main establishment in the Union, if any, and, where applicable, any secondary branch in another Member State or that of the legal representative;
  6. a public website containing complete and up-to-date information on the entity and its activities, including as a minimum the information referred to in points (a), (b), (d), (e) and (h);
  7. entity’s contact persons and contact details;
  8. objectives of general interest it intends to promote when collecting data;
  9. nature of the data which the entity intends to control or process and, in the case of personal data, an indication of the categories of personal data;
  10. any other documents demonstrating compliance with the requirements of Article 18 of the DGA.
  • Obligation to notify within 14 days any changes to the information provided in pursuant to Article 19(4) of the DGA,

​​Obligation to submit an annual activity report in pursuant to Article 20(2) of the DGA.

CTU cannot yet register candidates for the status of a recognised data altruism organisation.

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