Work package 13: Ethics and Security
Lead: Gothenburg University
What is the expected outcome of WP13
Ethical and security is addressed in WP13, which is a dedicated work package for this specific task. WP13 oversees all major ethical questions in this program by implementing an ethical guard and an External Ethics Advisory Board. This includes upholding the highest ethical standards during the project to produce applications for ethics review boards and to assure that permits and compliance with EU rules for personal data protection are maintained. The expected outcome is therefore five-fold: i) establishing as an ethical guardian for each study site; ii) establishment of external ethics advisory board; iii) overseeing ethical permissions for the retrospective data analysis; iv) overseeing the ethical permissions for the prospective studies and; v) acting as an ethical compass for the project as a whole.
What is the core focus in WP13
WP13 oversees the implementation of all necessary measures to coordinate and uphold the highest ethical standards during the Sleep Revolution project. An ethical guardian has been appointed to co-ordinate ethical approval application processes in each of the institutions and countries involved in the data collection. Furthermore, a Data Protection Officer (DPO) carries out the necessary tasks in the project, including assisting all participants in applying for the needed ethical permits and ensuring that the project as a whole complies with the EU rules for personal data protection (GDPR). As a part of WP13, an ethics and security review of the project work and deliverables will be performed annually.
How does WP13 fit into the Sleep Revolution project
The project has a dedicated Ethics and Security work package (WP13) with an ethical guardian appointed at each study site to apply for needed ethical approval. The ethical guardians will collaborate with the leaders of WP13 as well as the Coordinator and together they are answerable to the European Commission on any central ethics questions. In addition, the EEAB will review all ethical and data protection issues within the project and advice on other needed activities. The project has a dedicated Ethics and Security work package (WP13) with an ethical guardian appointed at each study site to apply for needed ethical approval. The ethical guardians will collaborate with the leaders of WP13 as well as the Coordinator and together they are answerable to the European Commission on any central ethics questions. In addition, the EEAB will review all ethical and data protection issues within the project and advice on other needed activities.
Participants
Gothenburg University
Reykjavik University
European Sleep Research Society e.V.