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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

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

  1. In order to facilitate the collection of data based on data altruism, the Commission shall adopt implementing acts establishing and developing a European data altruism consent form, after consulting the European Data Protection Board, taking into account the advice of the European Data Innovation Board and duly involving relevant stakeholders. The form shall allow the collection of consent or permission across Member States in a uniform format. Those implementing acts shall be adopted in accordance with the advisory procedure referred to in Article 33(2).
  2. The European data altruism consent form shall use a modular approach allowing customisation for specific sectors and for different purposes.
  3. Where personal data are provided, the European data altruism consent form shall ensure that data subjects are able to give consent to and withdraw consent from a specific data processing operation in compliance with the requirements of Regulation (EU) 2016/679.
  4. The form shall be available in a manner that can be printed on paper and is easily understandable as well as in an electronic, machine-readable form.
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  • 52
  • 54
  • 59

Recital 52

To promote trust and bring additional legal certainty and user-friendliness to the process of granting and withdrawing consent, in particular in the context of scientific research and statistical use of data made available on an altruistic basis, a European data altruism consent form should be developed and used in the context of altruistic data sharing. Such a form should contribute to additional transparency for data subjects that their data will be accessed and used in accordance with their consent and also in full compliance with the data protection rules. It should also facilitate the granting and withdrawing of consent and be used to streamline data altruism carried out by undertakings and provide a mechanism allowing such undertakings to withdraw their permission to use the data. In order to take into account the specificities of individual sectors, including from a data protection perspective, the European data altruism consent form should use a modular approach allowing customisation for specific sectors and for different purposes.

Recital 54

The European Data Innovation Board should assist the Commission in coordinating national practices and policies on the topics covered by this Regulation, and in supporting cross-sector data use by adhering to the European Interoperability Framework principles and through the use of European and international standards and specifications, including through the EU Multi-Stakeholder Platform for ICT Standardisation, the Core Vocabularies and the CEF Building Blocks, and should take into account standardisation work taking place in specific sectors or domains. Work on technical standardisation could include the identification of priorities for the development of standards and establishing and maintaining a set of technical and legal standards for transmitting data between two processing environments that allows data spaces to be organised, in particular clarifying and distinguishing which standards and practices are cross-sectoral and which are sectoral. The European Data Innovation Board should cooperate with sectoral bodies, networks or expert groups, or other cross-sectoral organisations dealing with the re-use of data. Regarding data altruism, the European Data Innovation Board should assist the Commission in the development of the data altruism consent form, after consulting the European Data Protection Board. By proposing guidelines on common European data spaces, the European Data Innovation Board should support the development of a functioning European data economy on the basis of those data spaces, as set out in the European strategy for data.

Recital 59

In order to ensure uniform conditions for the implementation of this Regulation, implementing powers should be conferred on the Commission to assist public sector bodies and re-users in their compliance with conditions for re-use set out in this Regulation by establishing model contractual clauses for the transfer by re-users of non-personal data to a third country, to declare that the legal, supervisory and enforcement arrangements of a third country are equivalent to the protection ensured under Union law, to develop the design of the common logo for data intermediation services providers and of the common logo for recognised data altruism organisations, and to establish and develop the European data altruism consent form. Those powers should be exercised in accordance with Regulation (EU) No 182/2011 of the European Parliament and of the Council (1).


(1) Regulation (EU) No 182/2011 of the European Parliament and of the Council of 16 February 2011 laying down the rules and general principles concerning mechanisms for control by the Member States of the Commission’s exercise of implementing powers (OJ L 55, 28.2.2011, p. 13).