DATAETHICS – Changing Landscapes in the Health and Life Sciences: Ethical Challenges of Big Data was a transnational project co-funded by the Erasmus+ Programme of the EU, aimed at transferring best practices in Life Sciences and related fields. It addressed 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 project was successfully executed by the Eurolife 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 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 recognized that technological advancements had outpaced ethical and conceptual considerations since the Human Genome Project. To address the mismatches in skills in ethical consideration of Biomedical Big Data across partner institutions, the project provided 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 Intellectual Output 1, titled: “Recommendations and analysis of the competences and evaluation of expertise” offers analysis with reference to the mismatches in skills in ethical consideration of BBD acorss Eurolife partner institutions. The purpose of these analyses was to inform the development of an engaging and tailored DATAETHICS education and training programme that aligns with the discerned needs and expectations of both students and university staff within our partner institutions.
The DATAEHICS Intellectual Output 2, 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. The courses, the DATAETHICS Intellectual Output 3, 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 designed and developed in the frameowkr of DATAETHICS as its Intellectual Output 5. The Open Badges allow the participants to showcase their acquired skills and competence, introducing innovation in academic recognition.
Five semi-annual DATAETHICS Schools co-funded by the Deutsch-Französische Hochschule employing the Values and Knowledge Education (VaKE) method, lied at the heart of the applied DATAETHICS 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, Intelectual Output 4, opened a window of opportunity for continuous improvement in the delivery of quality teaching and unification of learning criteria in Life Science and beyond.
The DATAETHICS Intellectual Output 6 provides a comprehensive overview of the methodology and its application for the evaluation framework and the quality plan in EUROLIFE DATAETHICS.
DATAETHICS expedited cooperation across sectors, both within the EU and globally, to identify best practices for BBD, ultimately improving medical knowledge and clinical care. The project 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.