WP7 Ethics and privacy

Lead beneficiary: University Institute of Lisbon (Portugal), University of Jyväskylä (Finland)

Work Package 7 aims at identifying national ethical requirements for studying children from birth onwards, establishing a Consortium wide ethical protocol for EuroCohort, and Ensuring that all data is compliant with national and EU privacy laws. It will follow that respondents give their informed consent and can be guaranteed full confidentiality in their responses and that their privacy is respected at all times. Longitudinal designs require particularly robust procedures to secure respondent privacy and anonymity given that responding is not a ‘once only’ event. There are examples of ethical and privacy protocols in existence across Europe, and indeed outside Europe, and they will be used as a starting point to develop an ethical protocol for EuroCohort which will minimally comply with, but aim to exceed, both EU and national level legal requirements and will be a robust safeguard against the disclosure of respondent identities.

Tasks

T7.1. Collate ethical protocols from EUSILC, SHARE, GGS to identify specific issues which arise from the collection of longitudinal data cross nationally in Europe.

T7.2. Collect and compare translated national protocols of longitudinal surveys (at least one from the last 5 years per country).

T7.3. Collate ethical protocols from NEPS, GUI, GUS, MCS to identify specific issues which arise from studying children and their families.

T7.4. Draft a Consortium ethical protocol for EuroCohort which includes all aspects of informed consent and privacy (based also on PISA, PIRLS, TIMMS, ECHP and ISCweb for the aspects related with minors).

T7.5. Draft a Consortium protocol which governs the storage, anonymization, access and use of EuroCohort data.