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Chapter IV – Data altruism (Art. 16-25)

Art. 16 DGA - National arrangements for data altruism arrow_right_alt

Art. 17 DGA - Public registers of recognised data altruism organisations arrow_right_alt

Art. 18 DGA - General requirements for registration arrow_right_alt

In order to qualify for registration in a public national register of recognised data altruism organisations, an entity shall:

    1. carry out data altruism activities;
    2. be a legal person established pursuant to national law to meet objectives of general interest as provided for in national law, where applicable;
    3. operate on a not-for-profit basis and be legally independent from any entity that operates on a for-profit basis;
    4. carry out its data altruism activities through a structure that is functionally separate from its other activities;
    5. comply with the rulebook referred to Article 22(1), at the latest 18 months after the date of entry into force of the delegated acts referred to in that paragraph.
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  • 46

Recital 46

The registration of recognised data altruism organisations and use of the label ‘data altruism organisation recognised in the Union’ is expected to lead to the establishment of data repositories. Registration in a Member State would be valid across the Union and is expected to facilitate cross-border data use within the Union and the emergence of data pools covering several Member States. Data holders could give permission to the processing of their non-personal data for a range of purposes not established at the moment of giving the permission. The compliance of such recognised data altruism organisations with a set of requirements as laid down in this Regulation should bring trust that the data made available for altruistic purposes is serving an objective of general interest. Such trust should result in particular from having a place of establishment or a legal representative within the Union, as well as from the requirement that recognised data altruism organisations are not-for-profit organisations, from transparency requirements and from specific safeguards in place to protect rights and interests of data subjects and undertakings.

Further safeguards should include making it possible to process relevant data within a secure processing environment operated by the recognised data altruism organisations, oversight mechanisms such as ethics councils or boards, including representatives from civil society to ensure that the data controller maintains high standards of scientific ethics and protection of fundamental rights, effective and clearly communicated technical means to withdraw or modify consent at any moment, on the basis of the information obligations of data processors under Regulation (EU) 2016/679, as well as means for data subjects to stay informed about the use of data they made available. Registration as a recognised data altruism organisation should not be a precondition for exercising data altruism activities. The Commission should, by means of delegated acts, prepare a rulebook in close cooperation with data altruism organisations and relevant stakeholders. Compliance with that rulebook should be a requirement for registration as a recognised data altruism organisation.

Art. 19 DGA - Registration of recognised data altruism organisations arrow_right_alt

Art. 20 DGA - Transparency requirements arrow_right_alt

Art. 21 DGA - Specific requirements to safeguard rights and interests of data subjects and data holders with regard to their data arrow_right_alt

Art. 22 DGA - Rulebook arrow_right_alt

Art. 23 DGA - Competent authorities for the registration of data altruism organisations arrow_right_alt

Art. 24 DGA - Monitoring of compliance arrow_right_alt

Art. 25 DGA - European data altruism consent form arrow_right_alt