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.

 

Summary of WP7

Ethical norms promote and sustain the general objectives of scientific research as the responsibility for the impacts on participants, society and the environment; honesty and transparency in research procedures and methodologies; reliability and rigor in the various research activities as well as objectivity in the analysis and interpretation of results anchored in demonstrable evidence.

Codes of conduct also promote the regulation of relations between different people, disciplines and institutions involved in scientific research. Ethical standards (guidelines for authorship, data sharing, etc.) that foster collaborative work, trust, responsibility and integrity among the stakeholders contribute to the research being conducted in an environment of cooperation and scientific quality.

The purpose of the work package

Working Package 7 (WP7) “Ethics and Privacy” aimed to establish a consortium-wide ethical protocol for EuroCohort that is compliant with national and EU privacy laws and includes inputs from children and young people themselves (collaboration with WP6 - “Engagement with children, young people, and families”).

In a nutshell, WP7 aimed to:

  • identify national ethical requirements for studying children from birth onwards;
  • establish a consortium wide ethical protocol for EuroCohort;
  • ensure that all data is compliant with national and EU regulations.

What did we do

In order to develop this European wide protocol which is meant to accommodate both national variations and European standards and regulations on ethics, privacy and data protection, we have:

  • delivered a short survey in the Jyväskylä project meeting where we collected contributions on the ethical challenges that partners have been meeting and expect to meet in their home countries (top-down approach);
  • gathered the partners’ contributions regarding children and young people (CYP) participation and made suggestions of questions to be asked on CYP focus groups held by WP6 (bottom-up approach advocated for the Project);
  • collected and analysed the documentation sent by the partners regarding protocols of ethics and national legislation;
  • collected and analysed ethical protocols of research projects from European lead institutions to identify issues specific to longitudinal studies across Europe and issues which arise from studying children and families;
  • analysed carefully the General Data Protection Regulation (GDPR) to confront it with the contents gathered previously;
  • asked WP6  for CYP inputs concerning ethics and privacy issues (resulting from the focus groups);
  • drafted the Ethics Protocol for EuroCohort Project which is validated by the Project Consortium.

What did we find

Top-down approach report:

  • Legislation, regulations and ethics protocols are the top concerns registered by the partners;
  • Country specific legislation, lack of legislation regarding research, GPDR and CYP’s consent are other main issues of concern.

Internal report:

  • Lack of systematized and publicly available ethics protocols;
  • Ethical codes are still viewed as internal research documents, and not part of the documents subject to transparency;
  • Lack of longitudinal surveys or surveys involving CYP in some countries;
  • Most of the countries have legislation available which fits GDPR’s requirements.