“I would say that being in BBMRI-ERIC is a very good thing: it makes you sure that you are doing great things and you are going along with other countries which are much bigger, with more resources, more scientist, everything more” Andres Metspalu, BBMRI.ee.

This is a two-part episode which shares stories from across BBMRI-ERIC’s Member States and communities that were presented at the BBMRI-ERIC 10th anniversary workshop. Each story demonstrates the wide-ranging expertise and impact of the research infrastructure that our community both shapes and benefits from. 

In this episode, you will hear impact stories from our IT and ELSI services introduced by Petr Holub, BBMRI-ERIC Chief Information Officer, and Michaela Th. Mayrhofer, Head of BBMRI ELSI. You will first meet Andres Metspalu, representing BBMRI.ee and Michael Hummel, representing the German National Node. 

These are followed by two impact stories from Annelies Debucquoy and Zisis Kozlakidis, respectively National Node Director for Belgium and IARC/WHO.

Look out for part two that will contain stories from Quality Management and Biobanking Development. 

Learn more about BBMRI-ERIC: https://www.bbmri-eric.eu 

“We as scientists, we as professionals, we as leaders have to first of all realise how the situation is changing, a change of epoch, and how to manage. Because for the first time, the dams that shaped our security are trying to break.”

This episode shares the keynote address delivered by Professor Walter Ricciardi at the BBMRI-ERIC 10th anniversary workshop. 

The anniversary event was held at the Permanent Representation of Austria to the European Union, Brussels on 29 February 2024 and brought together key members of the biobanking community to explore BBMRI-ERIC’s impact as a research infrastructure over the last ten years and look to the future. 

We were delighted, and privileged, that the 10th anniversary keynote was delivered by Prof. Walter Ricciardi who is the EU Cancer Mission Board Chair and Chair of the BBMRI-ERIC Scientific and Ethical Advisory Board. 

Walter has been a key advisor for BBMRI-ERIC over a number of years and shares our strong vision on the importance of health and life science research for societal wellbeing. He also understands the vital role that biobanks play in this. 

Prof. Ricciardi is full Professor of Hygiene and Director of the School of Hygiene and Public Health, Università Cattolica del Sacro Cuore (UCSC) (Rome). He is Chair of Mission Board for Cancer (EC), Scientific Committee of Human Technopole Foundation, European Mission Board for vaccination. 

In this talk, Professor Ricciardi presents an urgent case for science in an age when we are facing multiple pressures on our health that is intrinsically linked to the health of our planet. 

You will hear him link to the EU Mission on Cancer and the vital role that policy makers play in supporting the work of research infrastructures, such as BBMRI-ERIC, to drive forward innovative approaches, standards and research into solving major health challenges.

Learn more about BBMRI-ERIC: https://www.bbmri-eric.eu 

Episode 12 introduces you to the canSERV project that focuses on providing over 400 cutting-edge and customised cancer research services. BBMRI-ERIC acts as coordinator for canSERV.

The services and tools are made available to the cancer research community EU wide, enable innovative R&D projects and foster precision medicine for patients’ benefit across Europe.

Experts from the project walk listeners through the Open Call - taking applications until 4 January 2024.

Originally a live webinar, the podcast is presented by canSERV consortium members Saba Abdulghani, Jens Habermann, Enzo Medico, Manuela Pausan and Judit Balogh. 

The Q&A that followed after is being developed into a FAQ. Explore the project, and apply to the Open Call, by visiting the canSERV website.

Organoids are defined as three-dimensional (3D) cell culture systems that can be called “mini-organs” as they mimic some of the key multicellular, anatomical and even functional characteristics of real organs. Organoids are praised as a substitute for animal models in preclinical studies. At the same time, organoid technology raises issues around informed consent or privacy of donors.

This episode of ELSI Dialogues features multidisciplinary experts discussing ethical, regulatory, and scientific aspects of organoid technology. Following a brief introduction in organoid research, a special focus is placed on biobanking from the patient perspective. The panellists discuss trust, trustworthiness, therapeutic misconception, and the need for regulation. They also challenge definitions and the consequences of terminology such as ‘donation’ and ‘mini-organ’.

This is a collaborative effort between the ELSI Services & Research Department and the Stakeholder Forum Patient Pillar of BBMRI-ERIC.

Originally a live webinar, the podcast is presented by Melanie Goisauf with contributions from Zisis Kozlakidis, María Berdasco Menéndez, Signe Mežinska, and Mike Lensink.

The medical community is moving on a path towards more personalised and effective medical treatments and therapies for everyone. In doing so, it is crucial to integrate sex and gender into research as it has the potential to fuel structural and systemic change.

This episode of ELSI Dialogues explores how providing the research community with the resources and information needed to include sex and gender factors into their work will result in more inclusive and impactful results.

This topic is viewed from the perspective of researchers and healthcare professionals through subject areas including AI applications and nephrology.

Originally a live webinar, this podcast is presented by Janet Delgado with contributions from Melanie Goisauf and Mónica Cano Abadía.

“I learned that health care has a share of 6 to 8% in our total energy consumption - equal to the aviation sector. Although as health care researchers, we need to face this reality and act.”

This episode of the BBMRI-ERIC podcast goes behind Amsterdam UMC’s recent win of the International Freezer Challenge to explore biobanking sustainability and carbon literacy.

Jörg Hamann, Head of the Biobank and Management Committee member for The Netherlands' BBMRI National Node, tells Saba Abdulghani, BBMRI’s Head of Biobanking Development, about the significance of the win - Europe's first hospital to achieve the award.

Saba is also joined by Phil Korbel, Co Founder and Director of Advocacy at the Carbon Literacy Project, who will be working with BBMRI to develop a certified Carbon Literacy Toolkit. This initiative will form part of the Green Label that will enable Biobanks to demonstrate recognised sustainability credentials. 

Biobank legislation is not harmonised at the European Union level, and the Member States have taken considerably divergent approaches in how they regulate the field. Whereas some countries do not have specific regulations, others have adopted complex biobank laws.

This episode of ELSI Dialogues aims to present the unique legal framework for biobanking that is currently in place in Belgium. The Belgian Biobank law was first adopted in 2008, entered into force in 2018 and underwent an important reform in 2022. Moreover, the law is complemented by an essential piece of self-regulation, namely the Compendium on biobanks issued by the Federal Agency on Medicine Products and Health. The interplay with relevant data protection rules will also be the focus of our discussion.

Originally a live webinar, this podcast is presented by Ilaria Colussi with contributions from: Janos Meszaros, Teodora Lalova-Spinks, Introduction by Prof. Isabelle Huys 

“This tissue is really representing the patient and that's what I find very interesting about biobanking. You don't need to be there to be in research.”

This is the second of a two-part episode exploring the work of the BBMRI Stakeholder Forum Patient Pillar that brings together patient organisations from across Europe to help shape BBMRI’s biobanking related priorities and policies.

You will hear from Jana Pavlič-Zupanc, Head of Public Affairs at BBMRI-ERIC, who introduces the value of the Stakeholder Forum Patient Pillar and what makes it unique amongst research infrastructures.

We are particularly delighted to introduce the new Chair of the Stakeholder Forum and SEAB member, Eric Vermeulen. Eric is an experienced patient advocate where he combines his background as a nurse with neonatal experience and as a sociologist. Eric has long been involved in BBMRI via the Netherlands National Node and Health-RI. 

You will hear from Eric how his work highlighted the importance of biobanking and the role he feels the Patient Pillar has in providing strategic direction for BBMRI on some key health topics.

You can find out more about the Stakeholder Forum Patient Pillar here.

“Cancer is traumatising, and you want to forget it as soon as possible, but some of us believe our experiences can be useful for others.”

This first of a two-part episode looks at the work of the BBMRI Stakeholder Forum Patient Pillar that brings together patient organisations from across Europe to help shape BBMRI’s biobanking related priorities and policies.

You will meet two members of the Patient Pillar:

• Kathi Apostolidis, Past President and Chair of the Scientific Committee of the European Cancer Patient Coalition - ECPC
• Dr. Stefanie Hourwaart, member of the Scientific advisory board coordinator for the BRCA Network, Germany and Member of the Scientific Advisory Board of the German Biobank Node (GBN).

They explore, from their personal experiences, why patient advocacy and the Patient Pillar matters.

Listen to part two to meet Jana Pavlič-Zupanc, Head of Public Affairs at BBMRI-ERIC, and Eric Vermeulen, Chair of the Stakeholder Forum and Patient Pillar. 

You can find out more about the Stakeholder Forum Patient Pillar on the BBMRI-ERIC website: https://www.bbmri-eric.eu/stakeholder-forum/

“I think an ELSI expert is often seen as a patch for projects from the natural sciences. You can ask this ELSI expert anything that has to be solved in a certain way, it has to be a yes or no answer, then it’s done and you never have to talk about it again.” 

This episode of the BBMRI-ERIC podcast joins the ELSI (ethical, legal, societal issues/implications) team from across Europe when they met in person for the first time since the pandemic.

You hear from Michaela Th. Mayrhofer, Melanie Goisauf, Kaya Akyuz, Monica Cano Abadia, Irene Schlünder, Ilaria Colussi, Ulrike Felt, Anna Clareborn, Olga Tzortzatou, Lisa-Maria Ferent, Isabelle Budin Ljøsne and Gillian Martin.

Over two intense days in Vienna, the team shared findings and identified priorities for the next year.

Learn more about ELSI: www.bbmri-eric.eu/elsi

Theme music used with kind permission: 'i need a cup of coffee and some bread for wake up' by In Love With A Ghost. 

“We realised we needed to start something new to address the medical research reproducibility crisis.”

Episode four of the BBMRI-ERIC podcast explores a paper that was recently published in Nature. It illustrates a lightweight distributed provenance model designed for complex, real-world, environments. 

The paper has been researched and written by a wide-ranging group of experts and two of them, BBMRI staff - Rudolf Wittner, IT Scientist and Petr Holub, Chief IT Officer - help to explain the model’s significance for biobanking, reproducibility and the broader field of medical research data.

You can access the paper here.

Theme music used with kind permission: 'i need a cup of coffee and some bread for wake up' by In Love With A Ghost.  

Artificial Intelligence (AI) applications in medicine are hoped to improve healthcare and to advance health equity. While the technology carries the potential to improve health services, the ethical and societal implications need to be carefully considered to avoid harmful consequences for individuals and groups, especially for the most vulnerable. It is therefore inevitable to identify what types of ethical issues are raised by AI, and to analyse how these issues are tackled in biomedical research.

This webinar gives an overview of the results of a comprehensive and systematic review of academic literature as well as workshop outcomes. We will problematise approaches such as ‘trustworthy AI’ and ‘explainable AI’ that shape the ethics discourse on AI. The webinar concludes with a reflection on the topics identified that shape the understanding of ‘Ethics of AI’ and the gaps in the discourse. 

Theme music used with kind permission: 'i need a cup of coffee and some bread for wake up' by In Love With A Ghost

The "Sex and Gender in Biomedical Research" webinar series, is "Visualising the Complexity of Sex Determination".

The speaker, Amanda Montañez, explains the webinar as follows:

At Scientific American, we communicate the latest and most important information about science, health, technology, the environment, and society to the public. We often use information graphics to help illuminate complex ideas that are hard to explain fully through words alone. A few years ago, as part of a special issue on sex and gender, I led the development of a graphic on the spectrum of biological sex, a fascinating topic that I had not seen visualized before and turned out to be even more complex than I had imagined. In this talk I will explain the process of how the graphic was developed, what I learned, and how this project fits into my work as a graphics editor at Scientific American.

Theme music used with kind permission: 'i need a cup of coffee and some bread for wake up' by In Love With A Ghost

Andrea Wutte, Head of Quality Management at BBMRI-ERIC meets José Antonio López-Guerrero, Scientific Director of IVO Biobank to learn about how his team achieved the biobanking quality standard ISO 20387. IVO had the key support of Manuel Llombart Fuertes, Director General of Fundación Instituto Valencia De Oncología. The episode is introduced by Eva Ortega-Paíno, Spain’s National Node Director. 

Theme music used with kind permission: 'i need a cup of coffee and some bread for wake up' by In Love With A Ghost