ETHICAL AND REGULATORY CHALLENGES IN THE ERA OF OPEN SCIENCE:
Data Sharing in Life Sciences & Health
23 January - 27 January 2023 hosted at the Leiden University Medical Center, the Netherlands followed by a short virtual collaboration on a flexible schedule The call for applications is now OPEN Deadline for submission of applications: 17:00 CET on Sunday, 4 December 2022 APPLY NOW
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.
WHY THE DATAETHICS WINTER SCHOOL
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.
Some of the topics covered in the DATAETHICS Winter School are:
- Ethically managing open science and data sharing: lessons from the COVID pandemic
- Infrastructure and machine learning allowing distributed data exploitation
- AI and Big Data: ethical and legal considerations
- FAIR-data and VODAN Africa
- Diversity aspects linked to safety for exoskeleton and related med tech
- Practical experience from DPO Consultancy
The tentative program is available HERE
Hear from the participants to the DATAETHICS Summer School 2022 and learn what they have to say about the DATAETHICS school
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:
- Prof Ciara Staunton
- Carles Latorre
- Prof Anne-Christin Hauschild
- Prof PJ Wall
- Dr André Krom (LUMC)
- Prof Mirjam van Reisen (LUMC)
- Dr Eduard Fosch Villaronga (Leiden University)
- Prof Deborah Mascalzoni (Medical University Innsbruck)
- Jelmer Pieters (DPO Consultancy)
- Prof Ulrich Sax (UMG)
The full list of speakers will be available on this website shortly
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.
The course welcomes BSc, MSc and PhD students from the fields of medicine, biomedicine and life sciences, and priority is given to students from the DATAETHICS Partner Universities. Proficiency in written and spoken English is required.
To ensure active participation and exchange with teaching staff and fellow participants, as well as transnational character of the course, a maximum of 30 participants will be admitted to this course, with balanced representations of participants per DATAETHICS partner institutions. In addition, in case of equal quality of applications, the following groups will be given priority in the selection process:
- Students with disabilities
- Participants to the DATAETHICS virtual exercise, who did not participate in the DATAETHICS Schools to date
Please note, Candidates from the DATAETHICS partner institutions have priority in selections. Candidates from non-DATAEHICS institutions will only be nominated if the desired quota of students from the DATAETHICS partner institutions is not fulfilled.
Participation (travel and accommodation) of 18 selected students from the DATAETHICS partner institutions (with the set quota of 2 students per partner institution) will be funded by the DATAETHICS project.
The accommodation costs of the remaining 12 selected students will be supported by the project.
Required documents: Electronic Application Form, CV and Motivation Letter (minimum 200-300 words explaining the predicted impact of the participation on the Candidate’s academic/professional career).
Candidates should complete the online Application Form and together with the annexed documents, submit the application following the guidelines indicated in the online form.
Deadline for submission of applications: 17:00 CET on Sunday, 4 December 2022
All applicants will be notified on the selection results by 25 December 2023 through personalized email notification
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