- 08 - ELSI Dialogues: Introduction to the Belgian Biobank Legislation - A Piece of the Puzzle in the Complicated EU Regulatory Landscape
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.46m | Jul 13, 2023
- 07 - What is a Patient Pillar? Eric Vermeulen, New Chair, Explains - Part Two
“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.23m | Jun 28, 2023
- 06 - What is a Patient Pillar? How Patient Representatives are Shaping BBMRI-ERIC and Biobanking - Part One
“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/25m | Jun 28, 2023
- 05 - ELSI Dialogues: Why ELSI Matters!
“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.44m | Feb 15, 2023
- 04 - Exploring the Lightweight Distributed Provenance Model for Complex Real–world Environments - biobanking, medical research data and reproducibility
“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.31m | Jan 13, 2023
- 03 - ELSI Dialogues: Understanding the Ethics of AI
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 Ghost34m | Dec 15, 2022
- 02 - ELSI Dialogues: Sex and Gender in Biomedical Research - Visualising the Complexity of Sex Determination
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 Ghost41m | Dec 15, 2022
- 01 - Quality Talk: How IVO Biobank achieved ISO 20387
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 Ghost20m | Sep 23, 2022