Ethics privacy and data protection Our services Ethics

Ethics, privacy and data protection

Our services • Ethics Management We manage ethics requirements from proposal (e. g. ethics self-assessment, section 5) to project close, supporting partners in collecting research ethics approvals and identifying requirements for technology design, development, testing, and validation. • Data Management We produce project Data Management Plans (DMP), with sensitivity to FAIR data management principles, open access requirements, and protection of personal data. • Data Protection We ensure that projects comply with GDPR and other data protection legislation, as well as with the EU Charter of Fundamental Rights (e. g. through fundamental rights reviews and data protection impact assessments). • Impact Assessments We conduct ethics and societal acceptability research (e. g. requirements analysis, ethical and societal impact assessments) to maximise the positive impact of technology and innovation. • Ethics Advisory Boards We convene and coordinate Ethics Advisory Boards. These provide independent external review and expertise on ethics, privacy, and societal acceptability throughout the project lifecycle. 2

Ongoing EC-funded projects H 2020 programme. • ‘i-CONSENT’ (Swafs-17 -2016: The ethics of informed consent in novel treatment including a gender perspective). • ‘FOCUS’ (MIGRATION-08 -2018: Forced displacement and refugee-host community solidarity. ) 3

Why should we care about ethics? 4 SOURCE: Albena KUYUMDZHIEVA, DG R&I, Presentation on ‘Ethics and data protection in H 2020’, Information and networking days on the Horizon 2020 Work Programme 2018 -2020, Challenge "Climate Action, Environment, Resource Efficiency & Raw Materials" - 2020 calls, 16 Sep 2019.

Why should we care about ethics? 5 SOURCE: Julien GUERRIER, EASME, presentation on “H 2020 Work Programme for Research & Innovation 2018 -2020: Proposals, key points and lessons learnt”, Information and networking days on the Horizon 2020 Work Programme 2018 -2020, Challenge "Climate Action, Environment, Resource Efficiency & Raw Materials" - 2020 calls, 16 Sep 2019.

Why should CREDO consider data ethics? CREDO Project raises the following ethical issues: • Acquisition of large volumes of data, • Use of specific app downloaded in personal smartphones, • Data acquisition aims to cover a vast geographical area, of a global scale (not just limited to the EU). • Involvement of a huge number of citizen science participants, • And there will be others upon closer examination of the proposal 6

Why should CREDO consider data ethics? 7 SOURCE: Albena KUYUMDZHIEVA, DG R&I, Presentation on ‘Ethics and data protection in H 2020’, Information and networking days on the Horizon 2020 Work Programme 2018 -2020, Challenge "Climate Action, Environment, Resource Efficiency & Raw Materials" - 2020 calls, 16 Sep 2019.

Does CREDO collect/use personal data? • Personal data is any information that relates to an identified or identifiable living individual. Different pieces of information, which collected together can lead to the identification of a particular person, also constitute personal data. • Examples of personal data - a name and surname; - a home address; - an email address such as name. surname@company. com; - an identification card number; - location data (i. e. the location data function on a mobile phone); - an Internet Protocol (IP) address; - a cookie ID; - the advertising identifier of your phone; - etc. 8

YES YES YES 9

How can AND-CG contribute? AND-CG will help ensuring compliance with data management principles and practices in handling data within the project by: Proposal-based contributions: • Reviewing CREDO proposals for ethical and societal issues • Completing ethics assessment tables and other ethics sections (Section 5). Pre-agreement with EC: • Responding and liaising with ethics reviewers’ requests and clarifications during GA preparation. During the project: • Developing and implementing research ethics and personal data management plans. • Support on ethical, fundamental rights and privacy issues arising in the context of CREDO. • Convening independent ethical advisory boards. 10

Silvia Lorenzo Perez (LLM) Research Officer lorenzo-perez@and-cg. com +32 (0) 28924043 www. and-cg. com AND Consulting Group SPRL | Registered office: Place Marcel Broodthaers 8, 1060 -Saint Gilles, Brussels, Belgium Company registration number: 0690. 982. 963