IDEA4RC seeks to establish the framework for the first European Data Ecosystem for Rare Cancers, combining data from various sources in multiple EU countries. By leveraging data on rare cancers held by hospitals, clinics and EURACAN, the project aims to combine data with emerging interoperability technologies and AI approaches for distributed data integration, federated analysis, and knowledge extraction from existing structured and unstructured health data. This can improve the delivery of care, facilitate patients’ information and advance clinical and epidemiological research in rare cancers.
As such, the vision behind the IDEA4RC Ecosystem is to expand well beyond its initial partner hospitals and clinics, encompassing more and more data sources so as to optimise rare cancer research, and, consequently, improve treatment options.
Taking the above into consideration, the present deliverable focuses on one primary aspect of the IDEA4RC project: ethical requirements for enlargement, drawing and building upon the results of deliverable Ethical data governance. Based on this, the present deliverable considers the results of the evolution of ethical and normative issues arising within IDEA4RC in order to best design post-project activities.
This deliverable accordingly addresses ethical issues arising in the wider community beyond IDEA4RC pilot cases. In order to identify the scope of enlargement, the present deliverable identifies the preliminary legal and contractual requirements for enlargement, with regulatory requirements
for both European partners and extra-European partners. In identifying the core ethical requirements present worldwide, the deliverable presents and analyses relevant legislation and requirements at both an international and a European level.
Finally, building upon the ethics guidelines contained in D2.3, the deliverable presents the ethical considerations for enlargement. In order to achieve this, it introduces the Ethics by Design and By Default criteria that have been designed on the basis of the core ethical requirements on a global scale to assist in the identification and mitigation of ethical issues arising in research.
You can download the deliverable here.