DATAETHICS - Changing Landscapes in the Health and Life Sciences: Ethical Challenges of Big Data, is a trans-national project aiming at updating the conceptual and ethical considerations that arise from Biomedical Big Data (BBD) collection and use. From the completion of the Human Genome Project onwards, the advent of technological advances in the collection and analysis of BBD has considerably outpaced any conceptual and moral considerations that inevitably follow. Thus, the generation of such large datasets is no longer the major challenge, but rather their curation, handling and interpretation. Coupling ethical with scientific considerations in learning structures is now a necessary step to avoid a solely technocratic approach to BBD. This project supports EU and national policies in innovation and use of BBD reflected in initiatives for digital transformation as illustrated by the recent proposal for the Digital Europe programme (2021-2027) and aligned to the European Economic and Social Committee’s report on the ethics of BBD. Given that the pace of data collection and generation in biomedical sciences (e.g. the advent of genomics technologies, high throughput imaging, patient cohort collections) has far exceeded the pace by which students are being educated on these topics, we identified a substantial need for updated study material and novel educational approaches to bridge this gap. With the novel practical tools, content and guidelines offered here, DATAETHICS brings improved and durable availability of training with real-life examples, which will allow acquisition of the breadth and depth of skills and knowledge that students and teachers currently need in the life sciences. Furthermore, DATAETHICS facilitates unification of learning criteria and opens a window of opportunity for continuous improvement in the delivery of quality teaching in Higher Education. To fulfill the mission of DATAETHICS, this project will yield 4 core results as regards the ethical use of BBD: - Transfer of best practices - Development of broadly accessible online material collections - Establishment of a material repository for continuous material collections - Development of ethic models for biomedical, health care institutions and industry dealing with BBD The project is implemented by a consortium of 9 top-tier European academic institutions and medical centres from 9 countries, each with worldwide reputation in research excellence. Complemented by the engagement of a large network of associate partners, who will participate in the process of knowledge production and dissemination, the project will additionally act to further enhance industry-university cooperation. DATAETHICS will produce six novel, mutually supportive, and interdependent intellectual outputs (IO 1- IO 6): We will compile the current conceptual and ethical understanding of BBD across 9 European Higher Education Institutions (IO 1), which will guide the pedagogical design of the DATAETHICS novel Open Education Resources: a learning environment via an interactive e-platform (IO 2) and an on-line training package (IO 3) of 4 courses. Through these courses we will address the identified challenges with respect to curation, interpretation and analysis of accumulating biomedical datasets. We will explore course content that extends well beyond local structures, available course books or teaching material. Furthermore, we will consolidate local expertise, including that from industry, and offer theory and case studies of high pedagogical merit, with students acting as peer-tutors and sharing knowledge and abilities acquired with their fellows. Critically, we will improve penetrance of the material provided by our courses and relevant academic disciplines via Values and Knowledge Education (VaKE), and produce an e-Handbook on quality teaching in Higher Education with particular focus on the topics and results analysed in DATAETHICS (IO 4). Via DATAETHICS Open Badges (IO 5), the participants will be able to digitally showcase acquired skills and competence. Finally, weighted evaluation (IO 6) will enable an evidence-based further development of case studies for ethics in BBD. Four semi-annual DATAETHICS Summer and Winter Schools, each hosting 18 students and 10 subject-specialised teachers including external experts in the life sciences, lie at the heart of this broad, open, transcultural and interdisciplinary implementation approach. The Schools are further augmented by students' partaking in virtual collaborative exercises focusing on case studies. These activities will be enhanced by VaKE, which will create a sense of student-teacher mutual responsibility in the project and encourage equal dialogue "empowering" students to fully engage with the project. Improvement of medical knowledge and clinical care lies at the center of EU policy. To this end, DATAETHICS will expedite cooperation between EU countries to identify best practices for BBD.
Ethical Integration: Seamlessly integrate ethics with scientific knowledge, fostering a shared understanding of Big Biomedical Data (BBD) across sectors locally, in Europe and globally. Enhanced Competence: Improve the competencies of students and trainers in the field of BBD-related ethics, thereby enhancing the quality of learning and teaching. Wider Reach and Collaboration: Extend the project's influence and global collaboration facilitating outreach and fostering collaboration on both European and global scales. Ethical Best Practices: Promote the implementation of ethical best practices, particularly within the realms of biomedical and medical knowledge and clinical care. Long-lasting Impact: Establish a long-term and sustainable impact by collaborating with higher education institutions (HEIs), senior management, and policy networks to promote the dissemination and standardization of ethical interpretations related to BBD across Europe. Higher Education Reform: Empower participants with professional knowledge and networks, enhancing their connections within the European labor market and contributing to grassroots HE reform.
The project was proposed as response to critical needs related to ethics in BBD, to prevent ethical mistakes, which could hinder BBD science acceptance and progress. Need for Ethical Integration and udpated knowledge: integration of ethics with interdisciplinary scientific knowledge, fostering a shared understanding of Big Biomedical Data (BBD) across Europe and incorporating ethics into practical learning structures. Need for Enhanced Competence: enhancement of the quality of learning and teaching by improving the competencies of students and trainers in the realm of BBD-related ethics. Need for Ethical Best Practices: promotion of ethical best practices,in biomedical and medical knowledge and clinical care, supporting sustainability plans, and advocating for ethical procedures. Need for Higher Education Reform: contribution to continuous improvement in the delivery of quality teaching and unification of learning criteria in Life Science and beyond. Need for Network Expansion: investing in broader collaboration for successful establishment of standards in the ethical considerations of BBD Need for Digital applications: leveraged technology to revolutionize the organization of teaching and learning.