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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

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

Art. 20 DGA - Transparency requirements arrow_right_alt

  1. A recognised data altruism organisation shall keep full and accurate records concerning:
    1. all natural or legal persons that were given the possibility to process data held by that recognised data altruism organisation, and their contact details;
    2. the date or duration of the processing of personal data or use of non-personal data;
    3. the purpose of the processing as declared by the natural or legal person that was given the possibility of processing;
    4. the fees paid by natural or legal persons processing the data, if any.
  2. A recognised data altruism organisation shall draw up and transmit to the relevant competent authority for the registration of data altruism organisations an annual activity report which shall contain at least the following:
    1. information on the activities of the recognised data altruism organisation;
    2. a description of the way in which the objectives of general interest for which data was collected have been promoted during the given financial year;
    3. a list of all natural and legal persons that were allowed to process data it holds, including a summary description of the objectives of general interest pursued by such data processing and the description of the technical means used for it, including a description of the techniques used to preserve privacy and data protection;
    4. a summary of the results of the data processing allowed by the recognised data altruism organisation, where applicable;
    5. information on sources of revenue of the recognised data altruism organisation, in particular all revenue from allowing access to the data, and on expenditure.
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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. 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