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

The call for applications is now CLOSED

 

THEME SUMMARY

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 have explored 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 offered 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 created a flexible environment allowing for students to acquire new knowledge outlined in a dilemma story. This approach furthered the ability of students to apply newly-gained knowledge in true-to-life scenarios. The course also offered ample opportunities for networking with peers and thematic experts from different leading European medical institutions, as well as external speakers from academia and industry.

During the school the participants debated 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 learned 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

and more!

The programme is available HERE