From the 23rd of January till the 27th, 2023, the LUMC will host the winter school ETHICAL AND REGULATORY CHALLENGES IN THE ERA OF OPEN SCIENCE: Data Sharing in Life Sciences & Health. This winter school is the last in a series of five schools within the Eurolife DATAETHICS project and promises to be an exciting one!
The potential of big data coupled with the big strive for open science opens up regulatory and ethical challenges for the development of EU health research. Due to the increasing importance of the exploitation of data in health domain (for example – but not only – in the case of a pandemic) and to exploit the full potential of health data, the establishment of the European Health Data Space is being discussed and the notion of Open Science and Data-sharing acquires new dimensions.
While looking at what the brave new world might look like, we will explore how to frame research in this changing landscape that requires a greater exploitation of medical records, the extensive sharing of research datasets, and the introduction of new technologies such as Artificial Intelligence (AI). These concepts challenge our existing ethical and regulatory frameworks based on individual rights and new concepts emerge to frame a new bioethical paradigm based on the balance between individual rights and public value. Patient’s data are used and reused for many different purposes and common concepts as ethical and control oversight, as well as informed consent require revision. Issues to be addressed include FAIR access, control, privacy, transparency, security, accountability and justice. Coupled with a focus on the development of safe spaces to use data for health in EU, we will present hands on experiences and potential solutions for researchers.
This 5-day course offers a unique opportunity to interact during lectures from leading and established cross-disciplinary experts in data curation and privacy, data use, ethics, biomedicine, and related fields. Through a matrix of lectures, interactive sessions and small group assignments, we create a flexible environment allowing for students to acquire new knowledge outlined in a dilemma story. This approach furthers the ability of students to apply newly-gained knowledge in true-to-life scenarios. The course also offers ample opportunities for networking with peers and thematic experts from different leading European medical institutions, as well as external speakers from academia and industry.
Join us to debate the significance of coupling ethical with scientific considerations of the curation and handling of data sharing in the era of Open Science related to (bio)medicine, and learn about the latest developments in data science, bioinformatics, and applied AI in (bio)medicine.
Through your participation in the course, you will yourself with the value chain of ethical, social and legal considerations in the field of Open Science and Data Sharing and the Biomedical/Health domain. Through the group exercises based on a real-life case study, you will gain the basis to analyse, categorise and address key ethical considerations of data sharing and usage in the era of Open Science in the Life Sciences & Health domain. Through the opportunity to debate on a true-to-life dilemma, you will develop understanding on how to assess the use of Biomedical Big Data in the context of the ethical implications that inevitably follow it, and how to leverage ethical consideration in decision making. Participation in this course will foster your transversal skills and equip you with cutting edge knowledge on big data relevant to your study, research or internships.
The expertise of the speakers covers a broad spectrum of research and application interests from bioethics, health policy and social studies of medicine, to cutting-edge genomics, analysis of large heterogeneous high-throughput data-sets and usage related to Open Science for biomedicine.
The course will feature lectures from prominent international speakers:
The school will be further augmented by student participation in a virtual collaborative exercise focusing around the dilemma story introduced on Day 1 of the course, and will be based on a flexible schedule that can be organised around your commitments. This activity, taking place following the Winter School 2023, will be enhanced by a learning methodology structuring knowledge and developing soft skills based on value education. Participation in this exercise is obligatory for all participants to the DATAETHICS Winter School 2023 and its completion is the precondition for earning the DATAETHICS Open Badge.
The involvement and synergy of students and the DATAETHICS education trainers in the exercise is designed to allow for an equal dialogue. This virtual activity will end with an online assignment.
Students participating in the DATAETHICS Winter School will be awarded a certificate of participation. Furthermore, students will receive the DATAETHICS Open Badge for recognition of their qualifications, achieved via the practical exercise of applying the DATAETHICS training and knowledge in the process of the virtual collaboration.
This innovative certification method – the DATAETHICS Open Badge –allow the participants to digitally showcase the skills and competences they gained during the Winter School and the virtual exercise. The ultimate achievement recognised via this badge will be the report produced upon the completion of the practical exercise.