DATAETHICS – Changing Landscapes in the Health and Life Sciences: Ethical Challenges of Big Data is a transnational initiative aimed at transferring best practices in Life Sciences and related fields. It addresses the critical need to update study materials and educational approaches to bridge the gap between the collection and use of Biomedical Big Data (BBD) and available knowledge and training.
The initial three-year project has been successfully executed by a consortium of nine top-tier European academic institutions and medical centers across nine countries, all renowned for their research excellence. Over the three years of its implementation, DATAETHICS has fostered collaboration with national, European, and global partners from various sectors, including industry, setting an example of cooperation for innovation and exchange of good practice.
DATAETHICS recognizes that technological advancements have outpaced ethical and conceptual considerations since the Human Genome Project. To address this, DATAETHICS provides practical tools, novel content, and guidelines with improved and durable availability of training with a focus on real-life dilemmas. These resources match the rapid developments in data collection and generation in biomedical sciences, such as genomics technologies and patient cohort collections.
The DATAETHICS Canvas Platform serves as a knowledge and material repository, offering four highly pedagogical e-courses that cover ethical, legal, and societal aspects of BBD collection and management. These courses address the challenges related to data curation, interpretation, and analysis in biomedical datasets with contents consolidating international expertise, including that from industry, offering theory and case studies of high pedagogical merit:
DATAETHICS 1 “Ethical Considerations in Interpretation and Handling of Biomedical Big Data”
DATAETHICS 2 “The Ethics of Artificial Intelligence in Biomedicine”
DATAETHICS 3 “Big Data, Big Implications: Data Protection in Biomedicine”
DATAETHICS 4 “Ethical and Regulatory Challenges in the Era of Open Science Data Sharing in Life Sciences & Health”
Graduates of DATAETHICS receive Open Badges to digitally showcase their acquired skills and competence, introducing innovation in academic recognition.
Five semi-annual DATAETHICS Schools employing the Values and Knowledge Education (VaKE) method, lied at the heart of the applied DATAETHICS project’s transcultural and interdisciplinary implementation approach. They encouraged student-teacher mutual responsibility in the project, fostering equal dialogue in the design of the DATAETHICS training content enhancing its penetrance. The experience described in the DATAETHICS handbook, opens a window of opportunity for continuous improvement in the delivery of quality teaching and unification of learning criteria in Life Science and beyond.
DATAETHICS expedites cooperation across sectors, both within the EU and globally, to identify best practices for BBD, ultimately improving medical knowledge and clinical care. The project has successfully developed ethical models for biomedical and healthcare institutions and the BBD industry. With a growing network and benchmarks in place, DATAETHICS aims to sustain its impact in this dynamic field.
