EBRAINS hosts meeting on data dialogues: navigating transparency, privacy, and open science

Designed for all the teams involved in the EBRAINS 2.0 project, including data experts, researchers, and newcomers to the topics, this interactive meeting provided valuable insights and practical solutions tailored to their work. 

The meeting was opened by Lena Oden, leader of High-Performance Computing in EBRAINS 2.0, who introduced the EBRAINS 2.0 Ethics and Society Committee (EESC) members Teresa Sanchís, Cyril Pernet and Hervé Chneiweiss, whose expertise guided the meeting. Her opening remarks were followed by two keynotes exploring topics of key relevance for EBRAINS.

Cyril Pernet, senior research software developer, Neurobiology Research Unit at Copenhagen University Hospital, discussed the balance between transparency and privacy in data management and protection. Hervé Chneiweiss, head of EBRAINS Ethics and Society Committee and research director at the CNRS, shed light on the complexity of open science. Chneiweiss had leading roles in the formulation of recommendations of the UNESCO and  the OECD on Neurotechnology, which he presented and explained to the participants.

The EESC provides advice on ethical issues relevant for the project and engaged in an open dialogue on how to consider various national regulatory frameworks and recent developments relevant for storing and sharing neuroscientific data.

The EESC, committed to promoting ethics, equality, equity, diversity, and inclusion (EEEDI) across all research teams, was available at the event to address questions and concerns related to these topics. Their goal is to strengthen EEEDI within the project and ensure an insightful and inclusive ethics reporting process.

Participants also had the opportunity to engage in breakout sessions focusing on various topics relevant to their areas of responsibility. They worked across disciplines and teams to identify key questions and actions steps on the following topics: ensuring that relevant guidelines are known throughout the project and members are enabled to act accordingly; enhancing user involvement and accessibility of EBRAINS tools and services; and exploring opportunities to become a green infrastructure. Each group integrated insights from the keynotes and synthesised findings to be shared project-wide.

The EESC played a pivotal role in the day’s success, fostering a dialogue on ethical issues in data management and related topics. Cyril Pernet and Teresa Sanchís, executive coordinator of the Spanish Platform for Nanomedicine (Nanomed Spain), praised the meeting as a successful step in embedding ethical reflection into every aspect of EBRAINS 2.0. Hervé Chneiweiss remarked that the event “demonstrated EBRAINS’ commitment to ethics, equity, and inclusion as essential components of scientific excellence.” 

What’s Next?

“OSCA 1 is just the beginning. Findings from this meeting will guide the next steps. By reflecting and connecting across work packages, with upcoming events, we are aiming for innovative and impactful ethical practices." commented Karin Grasenick, EEEDI expert for the EBRAINS 2.0 project.