On 24 March 2026, three expert speakers joined us for a new ELSI Dialogues webinar to discuss the role biobanks can play in realising the One Health strategy. Josephine Uldry, Jakob Zinsstag and Adam Strobeyko discussed One Health from philosophical, societal, legal and practical perspectives, highlighting the complexity of the topic.

This webinar opens with a short introduction by Josephine Uldry (Swiss Biobanking), outlining the means for the biobanking community to support a One Health approach in research. Prof. Jakob Zinsstag (Swiss Tropical and Public Health Institute), a pioneer of the One Health concept, shares insights from his extensive field experience in implementing this approach in diverse contexts and communities, illustrating how One Health approaches can improve epidemiology and public health policy in practice. Dr Adam Strobeyko (Swiss Biobanking and Global Health Centre, Geneva Graduate Institute) discusses the legal dimensions of pandemic prevention, preparedness, and response the efforts to integrate One Health into international frameworks and practical implications for biobanks.

About One Health

The goal of One Health is to balance and optimise the health of humans, animals, plants and the environment. This view moves away from an anthropocentric approach centred around humans and recognises how tightly these realms and their health are interwoven. This is a crucial step towards a healthier future as it is especially important for tackling emerging zoonotic diseases (infectious diseases transmitted from non-human animals to humans), antimicrobial resistance, food safety risks, environmental pollution and global health security.

Biobanks at the centre of One Health

Biobanking across human and non-human domains can play a key role in operationalising the One Health approach. They can support the collection, storage and sharing of human, animal, plant and environmental samples and data as indispensable resources for surveillance, research and policymaking.

BBMRI-ERIC and One Health

 Our recently published 10-Year Roadmap (2025-2035) and our current Work Programme (2025-2027) are guided by the One Health approach as clear direction for our strategic development and actions. Follow our news on the website and on our socials for more info and future updates on the topic.

🔗 Watch the video recording here.

Constant dialogue with patients, caregivers and the public is a key guiding principle in biobanking and research. Yet, public and patient involvement, often referred to also as research participant involvement, has not yet become the usual practice in many biobanks.

This episode lets you revisit the first webinar organised by the BBMRI-ERIC Stakeholder Forum recorded on 4 February 2026. Focus is on the importance and benefits of involving patients and public representatives as co-partners in biobanking and research - the core mission of the Stakeholder Forum. They speak with the voices of lived experience and knowledge and can take a crucial role in shaping the biobanking ecosystem.

Four invited speakers - biobankers and patient representatives - discussed best practices on engagement and involvement and also addressed currently existing barriers and challenges. Sara Rebbling (Biobank Sweden) and Ronny Baber shared their experiences from the biobanking side whereas Eric Vermeulen (Chair of the BBMRI-ERIC Stakeholder Forum Patients’ and Citizens’ Pillar) and Albert Counet (President of Ligue Huntington Francophone Belge) addressed the topic from the patient persepective. Together, they explored practical solutions to strengthen participation and co-creation in biobanking.

Enjoy the recording of the webinar also here on Youtube and stay tuned for future webinars by the BBMRI-ERIC Stakeholder Forum. You can always find upcoming events and webinar here on our homepage.

Speakers:

• Eric Vermeulen, Chair of BBMRI-ERIC Stakeholder Forum Patients’ and Citizens’ Pillar and Patient Participation Advisor at PostCovid NL
• Ronny Baber, Head of the Leipzig Medical Biobank
• Sara Rebbling, Member of Biobank Sweden’s citizen engagement team and Department manager at Biobanken norr, Region Västerbotten
• Albert Counet, President of Ligue Huntington Francophone Belge and member of the BBMRI-ERIC Stakeholder Forum Patients’ and Citizens’ Pillar

Host: Manuela Pausan, BBMRI-ERIC

In the latest ELSI Dialogues session in October 2025, two invited experts, Macej Bobowicz, MD, PhD (Medical University of Gdansk) and Prof. Karim Lekadir (University of Barcelona), shared their thoughts and expertise on this highly current topic. The session was recorded on 28 October 2025 and moderated by Dr. Melanie Goisauf (BBMRI-ERIC).

Read our website article about the webinar for more details and insights.

About the speakers:

Dr. Maciej Bobowicz (Medical University of Gdańsk)

Dr Maciej Bobowicz is an Assistant Professor at the 2nd Department of Radiology, Medical University of Gdańsk, Poland, and a surgical oncologist specialising in breast cancer diagnostics and treatment. His research focuses on the ethical and clinically responsible use of artificial intelligence in oncology, radiomics, and precision medicine.

He leads or contributes to several EU-funded projects, including EuCanImage, RadioVal, MAYA, Cinderella, TRACE and CAREWAY. He is also part of the AI4HI network, which supports the EUCAIM initiative under Europe’s Beating Cancer Plan. Author of over 80 scientific papers, Dr Bobowicz is committed to advancing patient-centred, trustworthy, and equitable AI applications in cancer imaging and care.

Prof. Karim Lekadir (University of Barcelona)

Karim Lekadir is an ICREA Research Professor in the Department of Mathematics and Computer Science at the University of Barcelona. He obtained his PhD from Imperial College London and was a postdoctoral researcher at Stanford University. He investigates new data science techniques for trustworthy and ethical artificial intelligence in medicine. He has been PI in 15 EU-funded projects, coordinated 6 Horizon projects, and was awarded an ERC Consolidator grant to investigate new AI techniques tailored to resource-limited settings.

Moderator: Melanie Goisauf (BBMRI-ERIC)

Dr. Melanie Goisauf is an accomplished social scientist with a PhD in Sociology (University of Vienna). She also studied at the Royal Holloway University of London and completed the postgraduate programme “Sociology of Social Practices” at the Institute for Advanced Studies (IHS) Vienna. As senior scientist at BBMRI-ERIC she is involved in several research projects and serves on ethical advisory boards. Dr. Goisauf also leads the Ethics of AI Lab, which focuses on the ethical and social implications of artificial intelligence, and is in charge of the scientific coordination of the Horizon Europe project PERIFORMANCE.

BBMRI-ERIC sponsored Ángel’s participation and the experience helped spark his motivation to become independent and establish his own translational research lab. Later, as his dream of building a lab began to take shape, Ángel started analysing clinical samples and BBMRI-ERIC played a key role by helping him identify suitable collections for his research and by streamlining access to them.

In today’s episode, Angel shares his research, his vision for personalised cancer therapies and offers advice to aspiring scientists considering a career in research. 

Further reading: 

Lindau Nobel Laureate Meeting: https://www.lindau-nobel.org/

BBMRI Podcast: https://www.bbmri-eric.eu/bbmri-eric/bbmri-eric-podcast/

(Melanie Goisauf)

In episode 33 of the BBMRI-ERIC podcast we listen in on a recent BBMRI-ERIC ELSI Dialogues session recorded in June 2025, a vivid experts’ discussion covered concepts and practical means to effectively utilise the potential of patients’ unique perspectives. Moderator Melanie Goisauf, ELSI Senior Scientist at BBMRI-ERIC, discussed ways to successful patient engagement with three invited experts: Margareta Haag (Chair of the Swedish Network against Cancer), Stefanie Houwaart (Patient representative in the German BRCA network) and Zisis Kozlakidis (Head of Laboratory Services and Biobanking at IARC/WHO[ES1] ).

Patient engagement is a continuous process of mutual learning

The challenge of actively involving patients in medical research has many names - patient engagement, participation, involvement or participatory research. The unifying goal behind these terms is to give patients a powerful voice and an active role in the process of developing better and more effective treatments and care for everyone.

The discussion revolved around one central question: What does successful patient engagement in research look like? The panellists’ opinions can be summarised as univocal appeal to all involved groups; to keep constantly learning and find solutions together. Researchers need to adapt their work from a patient’s perspective and vice versa - patients benefit from learning the basics of research projects. Stefanie Houwaart (Patient representative in the German BRCA network) emphasised the importance of constant mutual learning:

“It's a process. And we are all learning all the time. So, we three [invited experts] might be in the game for several years already. But we are still learning. And lots of people need to learn. And scientists have to be trained in patient engagement. In Germany there is now more and more training for scientists in patient participation, to learn how to do this and implement this in their very own project.” (Stefanie Houwaart)

Everyone can become a patient, but it needs time and effort to become a patient representative

Margareta Haag (Chair of the Swedish Network against Cancer) presented her experiences and views from the patient and patient representative perspective. Margareta sketched the journey of a patient who first enters the system without knowing how to navigate it but is able to learn along the way to become an educated patient advocate.

“From patient-to-patient advocate, it takes a long time. It's a process. […] It takes time to become a patient that actually can communicate with persons on the other side of the table and then also in research. But you can learn, and you can also teach the professionals that this is the way I work and this is my life.” (Margareta Haag)

From individual efforts to structural changes of the system

Building on individual initiatives, the value of bringing educated patient advocates to the table is getting more broadly recognised as an integral part of medical research. But systematically incorporating this into daily research practice needs effort and engagement from all sides to adapt existing systems. Zisis Kozlakidis, virologist and Head of Laboratory Services and Biobanking at IARC/WHO, introduced this aspect addressing structural shortcomings in the system:

“Part of successful patient engagement is starting to break down some of the silos that have existed for a long time. One of the issues that we have is that a lot of the systems that we see globally, as part of our work, have not been designed with patient engagement in mind at all. […] Even when there are some initiatives to address this, you still see a space that's filled with professional jargon that is not really addressing the needs of the patient. […]. In this sense, we put a lot of emphasis on the education of the patient, the education of the general public as to what is possible.” (Zisis Kozlakidis)

Practical tips patient involvement in research projects

The discussion concluded with practical considerations for researchers to help improve future research by involving patients’ advocacy groups. Stefanie Houwaart stressed how important it is to start developing relationships with patient organisations early on:

“Often, the reality is that funding organisations, a ministry or the European Commission says, okay, now we have the checkpoint “patients’ participation” and then you have to run and you have to do this in a short time. I would really recommend every scientist who wants to do patient participation, to start reaching out to patient organisations early, even before they have a concrete project in mind.” (Stefanie Houwaart)

Melanie Goisauf, Moderator and Senior Scientist at BBMRI-ERIC pointed out the lacking visibility of the progress that is already being made in this field and that researchers and patients can build on:

“No one has to reinvent the wheel in their work, but we need more visibility for the often, I would say, invisible work, working with patients and the benefits this has for research.” (Melanie Goisauf)

More BBMRI-ERIC ELSI recordings and events

Stay informed with our ELSI Dialogues and webinars. Upcoming events are advertised on our events page. Including the upcoming 2025 ELSI Symposium in October addressing Ethical, Legal, and Societal Aspects in View of Recent EU Legislation.

This podcast is part of the canSERV project, which aims to deliver cutting-edge cancer research services to scientists across EU member states, associated countries, and beyond. The project unites a multidisciplinary consortium of 18 European partners specialising in oncology, project management, and sustainability.

The panellists:

Margareta Haag is the Chair of the Swedish Network against Cancer – an umbrella organization for cancer-profiled patient organizations and their families. As a Lymphoma patient since 1994 and Lymphoedema patient since 1995, Margareta acts as a patient representative. Margareta is the Former Executive Director for an international professional body and The Federation of Biomedical Laboratory Science as well as holding various positions including President of the umbrella organization Network against cancer and former President of the Swedish Association of Chronic Oedema.

Dr. rer. nat. Stefanie Houwaart MPH has a Diploma in Biology, a Master of Science in Public Health, and Dr. rer. nat. in Pharmaceutical Chemistry. Since 2012, Dr. Houwaart is active member of the patient community and patient representative in science and politics at the BRCA network e.V.. She is also Co-Founder and Managing Director of partieval – Advancing Participatory Skills, Process Support and Evaluation in Health.

Dr. Kozlakidis is a virologist, with a PhD in microbiology from Imperial College London. Dr. Kozlakidis is the Head of Laboratory Services and Biobanking at the International Agency for Research on Cancer, World Health Organization (IARC/WHO). Dr. Kozlakidis is responsible for one of the largest and most varied international collections of clinical samples in the world, focusing on gene–environment interactions and disease-based collections.

Dr. Melanie Goisauf is an accomplished social scientist with a PhD in Sociology from the University of Vienna. She also studied at the Royal Holloway University of London and completed the postgraduate program "Sociology of Social Practices" at the Institute for Advanced Studies (IHS) Vienna. Dr. Goisauf currently works as senior scientist at BBMRI-ERIC, where she is involved in several research projects and serves on ethical advisory boards. Dr. Goisauf also leads the Ethics of AI Lab, which focuses on the ethical and social implications of artificial intelligence.

During these episodes, you’ll experience the congress as it happens in Bologna, Italy from 13-16 May 2025. You’ll get a flavour of the event from interviews with organisers, speakers and delegates. If you missed day three, find it at Europe-biobank-week-dot-eu.

EBW is a yearly congress jointly organised between BBMRI-ERIC and ESBB. It unites over 800 biobankers, researchers, industry specialists and decision makers for keynotes, workshops, industry talks and parallel sessions over four days.

This final episode, recorded on 16 May, is when congress winds down but the pace is no slower with a vibrant Ethics Café, a set of parallel sessions and the closing ceremony. 

Contributors to the episode, as they appear, are:

• Dr. Jörg Hamann, Amsterdam University Medical Center
• Dr. Gesine Richter, University Kiel
• Prof. Prof. Roland Jahns, Universitätsklinikum Würzburg
• Prof. Ali Kilic, Izmir Biomedicine And Genome Center
• Mariona Arañó Loyo, Fundació Sant Joan de Déu
• Dr. Maria Grazia Cerrito, University of Milano Bicocca
• Dr. Mindaugas Morkunas, Vilnius University Hospital Santaros Klinikos
• Elsa Roland, Oslo University Hospital
• Patrick Skowronek, German Cancer Research Center (dkfz)

Links:

• Sant Joan de Déu: https://www.sjdhospitalbarcelona.org/en
• Closing ceremony award recipients: https://www.europebiobankweek.eu/ebw-news/ebw25-live/ebw25-live-closing-ceremony/
• Europe Biobank Week: https://www.europebiobankweek.eu
• BBMRI-ERIC: https://www.bbmri-eric.eu
• ESBB: https://esbb.org

Europe Biobank Week Congress is happening in Bologna, Italy from 13-16 May 2025. You’ll hear a flavour of the event through interviews with organisers, speakers and delegates. If you missed day one, find it at the Europe Biobank Week website.

EBW is the most important event of the year for the global biobanking community. A yearly congress, jointly organised between BBMRI-ERIC and ESBB, it unites over 800 biobankers, researchers, industry specialists and decision makers from across the life sciences to discuss the latest innovative research and industry changes. It features keynotes, parallel sessions and workshops and is held over four days.

This episode, recorded on 15 May, is when congress is in full swing.

Contributors to the episode, as they appear, are:

• Istahil Mohammed Ibrahim, Statens Serum Institut
• Adrie Kromhout, Amsterdam University Medical Center
• Prof. Professor Mait Metspalu, Institute of Genomics, University of Tartu
• Donal Melanaphy, Thermo Fisher Scientific
• Tania Porqueddu, Università Di Sassari
• Dr. Gianni D’Errico, Toscana Life Sciences 
• Dr. Piotr Mrówka, Institute of Hematology and Transfusion Medicine
• Dr. Mignon van Gent, Amsterdam University Medical Centre

Links:

• Estonian Biobank: https://genomics.ut.ee/en/content/estonian-biobank
• EP PerMed: https://www.eppermed.eu/
• Europe Biobank Week: https://www.europebiobankweek.eu
• BBMRI-ERIC: https://www.bbmri-eric.eu
• ESBB: https://esbb.org

Europe Biobank Week Congress is happening in Bologna, Italy from 13-16 May 2025. You’ll hear a flavour of the event through interviews with organisers, speakers and delegates. If you missed day one, find it at the Europe Biobank Week website.

EBW is the most important event of the year for the global biobanking community. A yearly congress, jointly organised between BBMRI-ERIC and ESBB, it unites over 800 biobankers, researchers, industry specialists and decision makers from across the life sciences to discuss the latest innovative research and industry changes. It features keynotes, parallel sessions and workshops and is held over four days.

This episode, recorded on 14 May, is when congress kicked off the scientific programme and covers the highlights.

Contributors to the episode, as they appear, are:

• Prof. Antonio Zoccoli, President of the ICSC
• Prof. Walter Ricciardi, Università Cattolica del Sacro Cuore, Rome
• Dr. Nicola Miller, School of Medicine, University of Galway
• Zohaib Hassan, German Biobank Node
• Prof. Elke Smits, Antwerp University Hospital and ESBB Ambassador
• Dr. Ricard Martinez, University of Valencia
• Dipl.-Ing. Roland Leiminger, ESBB
• Prof. Jens K Habermann, BBMRI-ERIC

Links:

• Europe Biobank Week: https://www.europebiobankweek.eu
• BBMRI-ERIC: https://www.bbmri-eric.eu
• ESBB: https://esbb.org
• ICSC: https://www.supercomputing-icsc.it/en/

Europe Biobank Week Congress is happening in Bologna, Italy from 13-16 May 2025. You’ll hear a flavour of the event through interviews with organisers, speakers and delegates. 

EBW is the most important event of the year for the global biobanking community. A yearly congress, jointly organised between BBMRI-ERIC and ESBB, it unites over 700 biobankers, researchers, industry specialists and decision makers from across the life sciences to discuss the latest innovative research and industry changes. It features keynotes, parallel sessions and workshops and is held over four days.

This episode takes you to the first day - 13 May - which hosts several workshops run by experts within their field. Learn what makes the workshops unique and how they’re valued as education opportunities by delegates.

Contributors to the episode, as they appear, are:

• Prof. Antonino Rotolo, Università di Bologna
• Dr. Nabila Choudhry - Research Analyst-Ethicist at WCM-Q
• Hugas Jasinskas, IT Specialist from The Biobank of Lithuanian Population and Rare Disorders
• Prof. Marialuisa Lavitrano, National Node Director for BBMRI Italy
• Dr. Sissy Kolyva, Hellenic Pasteur Institute Athens
• Stella Antoniou, Quality Manager at. BMRI-ERIC
• Dr. Marta Sobalska-Kwapis, Centre for Digital Biology and Biomedical Science - Biobank Lodz

Links:

• Europe Biobank Week: https://www.europebiobankweek.eu
• BBMRI-ERIC: https://www.bbmri-eric.eu
• ESBB: https://esbb.org

(Prof. Marco Montali)

In episode 28 of the BBMRI-ERIC podcast, Ilaria Colussi, Data Protection Officer at BBMRI-ERIC, and two guest experts discuss legal and technical aspects of using AI tools for biobanking. How can AI help modern biobanking? How can biobanks with their vast data and sample collections support the development of AI tools for e.g., medical diagnostics? And what are the legal frameworks that regulate the use and development of this rather young technology with its huge impact on humankind?

The EU AI act as pioneering attempt to legislate AI applications

New applications for AI tools/algorithms are currently blooming like spring flowers and it can be overwhelming to decide which of them can be integrated in one’s daily routine safely and responsibly. This holds true for personal use but especially for biobanking where large collections of sensitive biological samples and data are stored and made accessible for research.

Prof. Nikolaus Forgó (University of Vienna) is Professor for IT and IP law and a leading advisor e.g., as an expert member of the Austrian Data Protection Council and Member of the AI Advisory Board. In the first part of this episode, Prof. Forgó summarises the current state of the developing AI legislation in Europe:

“The pieces of legislation coming, in principle apply to everything. Be it Meta, be it a biobank, be it a public government institution. And two pieces of this legislation are of specific relevance for biobanks: The EU AI act and the EHDS (European Health Data Space) Act.”

(Prof. Nikolaus Forgó)

The EU AI act is globally the pioneering first legislation for a responsible use of AI. The challenge is to navigate how we can leverage the potential of AI applications in a responsible manner while securing privacy and safety rights of citizens and patients. Prof. Forgó describes the approach of the EU legislation to broadly assess the risks of AI applications:

“The AI act is the attempt of the European legislator to control the risks coming with AI. So, it's mainly about assessment of risks and then introducing specific obligations for specific risk categories.”

(Prof. Nikolaus Forgó)

A technical view on implementing AI applications into biobanking

The second guest expert speaker, Prof. Marco Montali (Free University of Bozen-Bolzano, Italy), is an expert in Computer Engineering and was awarded by the Italian Association of Artificial Intelligence the best under 35 Italian researcher in Artificial Intelligence. In the second part of this episode, Prof. Montali discusses technical aspects and consideration that are relevant when AI tools are introduced into biobanking. Prof. Montali points out the current challenges of AI integration:

“The technology is there. What is not there immediately, is how to use the technology properly.”

(Prof. Marco Montali)

Biobanks are in a position where they can hugely benefit from algorithms that are able to process and analyse large amounts of data. Vice versa, biobanks can provide such large amounts of high-quality data including medical images, that are essential to develop and train these specialised AI tools in the first place. Prof. Marco Montali describes this reciprocal benefit for AI research and biobanking with an example:

“It's not only biobanking helping AI, but AI helping biobanking, even before thinking about which problem we want to solve with AI. […] A lot of AI research is being focused on being able to integrate, to reconcile, to prepare, to clean the data. Obviously, this is connected to data science as a whole for then fuelling other AI algorithms.”

(Prof. Marco Montali)

When humans and AI work together

A critical aspect that touches all points of this discussion is the question how we can optimally utilise human-AI interactions for the best possible outcome. Where is it essential to include human oversight? How can medical experts integrate AI support in their work to improve and accelerate diagnosis? We need to understand and decide which tasks can be performed faster and maybe more reliably by an AI algorithm and which tasks strongly rely on the unique expertise of a trained medical expert. This is a challenge but also a huge opportunity for biobanking and biobank-related medical research and diagnostics.

Further reading:

• The EU AI act
• The European Health Data Space (EHDS)

(Melania Muñoz Garcia)

Sharing is caring. This also holds true for biological samples and data as resources for research. Episode 27 of the BBMRI-ERIC podcast explores how the Nagoya Protocol - an international agreement regulating collection, storage and sharing of non-human genetic resources - helps biobankers and researchers to distribute and utilise these resources responsibly, especially in times of globally decreasing biodiversity.

A key aspect of the agreement is the goal to share any benefits that arise from utilisation of these resources in a fair and equitable way between the country/institution that stores and provides the resources and those who use it. This promotes responsible use and fosters collaborations.

“Compliance with the Nagoya Protocol is not just a legal requirement, it's a powerful tool for promoting fair and equitable sharing of genetic resources.”

(Christian de Guttry).

In this recording of our latest ELSI Dialogues session in February 2025, three invited expert speakers joined host Ilaria Colussi, BBMRI-ERIC’s Data Protection Specialist, to share their knowledge and practical experience with the Nagoya protocol. Melania Muñoz Garcia (Leibniz Institute, DSMZ), Josephine Uldry (Swiss Biobanking Platform) and Christian de Guttry (Swiss Institute of Bioinformatics) describe the fundamental basics of the Nagoya Protocol and explore practical examples how the Nagoya protocol is applied in different countries and institutions.

Changes in daily practise have to go hand in hand with a change of the perception among researchers that compliance to regulations is a bureaucratic burden. In contrast, following the Nagoya Protocol’s guidelines supports ethical and reproducible science with genetic resources, with biobanks as crucial players.

You can also watch this and previous ELSI Dialogues sessions as webinar video recordings on our Youtube channel.

Further reading:

• The Nagoya protocol: https://www.cbd.int/abs/default.shtml
• The Nagoya protocol at the Leibniz Institute DMSZ website: https://www.dsmz.de/collection/nagoya-protocol
• Sharing nature’s genetic resources by the EC: https://environment.ec.europa.eu/topics/nature-and-biodiversity/sharing-natures-genetic-resources_en
• ELSI Dialogues on Youtube: https://www.youtube.com/watch?v=aZA1rVT75to
• ELSI services: https://www.bbmri-eric.eu/elsi/

Episode 26 takes you to a webinar on developing strategies for a trustworthy AI explored at the example of South-eastern Asia. After a quick introduction on how the European Union approaches this challenge, Thilma Komaling, one of the authors of Indonesia’s strategy on Artificial, takes you her home country where AI-assisted tools already help to improve broad access to health care.

Thilma shares her more than 20 years of experience in policy development here in this webinar organised by the BBMRI-ERIC ELSI team. ELSI specialises in addressing ethical, legal and societal implications of biobanking and the responsible use of sensitive data and new technologies.

The transformative potential of AI will not stop at national borders and so we can all profit from exchanging our experiences to use this technology for the best of society. Together with Thilma, Ilaria Colussi, one of BBMRI-ERIC’s legal experts, explores the common ground between the EU’s and Indonesia’s approach to a trustworthy AI.

“We need something very close to the heart of the people of Indonesia, because this is something that needs to be originally from Indonesia. What we believe and what we want to carry forward as a nation.”

Indondesia explores a strategy that builds on the country’s core values to find a human-centered apporach to responsibly integrate this highly transformative technology into the daily live. One example is Halodoc, an AI-assisted app, that allows Indonesia’s citizens access to health-related advise and information even in the remotest areas of the large, archipelagic country with its hundreds of languages.

Further reading (in order of contribution):

• EU guidelines on trustworthy AI: https://www.aepd.es/sites/default/files/2019-12/ai-ethics-guidelines.pdf
• Indonesia’s strategy for Artificial Intelligence: https://www.mfat.govt.nz/assets/Trade-General/Trade-Market-reports/Indonesias-National-Strategy-for-Artificial-Intelligence-July-2023.pdf
• ELSI Dialogues on Youtube: https://www.youtube.com/watch?v=TSrgDBZUUDQ&list=PLIu6KJ19npXy_HLjqtxNuXrB1XkADjWzP
• ELSI services: https://www.bbmri-eric.eu/elsi/

Episode 25 takes you to a workshop on information points for citizens under the European Health Data space. The workshop is jointly organised under the EHDS2Pilot project by BBMRI-ERIC’s ethical, legal and societal implications team and the Spanish Research Council in Brussels – CSIC where the workshop is being held.

The project brings together 17 partners including health data access bodies, health data sharing infrastructures and European agencies with the aim to build a pilot version of the European Health Data Space (EHDS) infrastructure for the secondary use of health data – known as “HealthData@EU” - which will serve research, innovation, policy making and regulatory purposes. 

The outcome is for the consortium to collaborate closely with the European Commission and their team working on developing the central services for secondary use of health data. 

Why does communicating about EHDS matter?

Under EHDS, citizens will have an opt out right in Europe so they need to be made aware their data may be used outside the immediate healthcare context. EHDS has provisions for individual control of data. How much should you make citizens aware of the use of their data and opt out rights?

This is a major topic that is being debated in political spaces and across European health communities. That’s because, if you care about how your health data might be used for research, EHDS is relevant to you.

The podcast explores how best to communicate with citizens that their rights are taken seriously, that they can keep in control of their data and its use, and to fulfil the legal obligations under the EHDS regulation.

Join patient organisations, experts and policy makers as they discuss the varied concepts that exist in the EU. You’ll hear about successful initiatives for informing the public about ongoing data sharing activities, as well as understanding past communication failures to give you a better understanding of what will help foster the implementation of the upcoming EHDS Regulation.

Further reading (in order of contribution):

• BBMRI-ERIC ELSI: bbmri-eric.eu/elsi/
• EHDS2Pilot Project: ehds2pilot.eu
• Spanish Research Council: csic.es/en/csic
• European Patient’s Forum: eu-patient.eu
• ELGA: elga.gv.at
• Kristiania University: kristiania.no/en/about-kristiania/employees/school-of-communication-leadership-and-marketing/departement-of-communication/audra-diers-lawson/
• CPME: cpme.eu
• EFPIA: efpia.eu
• Digital Europe: digitaleurope.org
• French Health Data Hub: www.health-data-hub.fr/
• FINData: findata.fi/en/
• MyGenome Portal: portaal.geenidoonor.ee/sisselogimine
• German Portal for Medical Research Data: medizininformatik-initiative.de/en/medical-research-request-health-data-centrally
• Health Data Lab: healthdatalab.de
• HIQA: hiqa.ie/about-us
• EHDS - European Commission: health.ec.europa.eu/ehealth-digital-health-and-care/european-health-data-space_en

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 its 4th Challenge-Driven Call on “Training the Next Generation of Cancer Researchers”.

Early Career Cancer Researchers, for example first-stage researchers (PhD students, junior researchers without PhD), or recognised researchers (postdocs, assistant professors, young investigators) world-wide are invited to apply for free access to cutting-edge transnational services with an indicative overall budget for this call of EUR 500,000.

The primary objective of this call is to empower early career scientists through access to research services and training in order to advance their scientific merits and careers.

Originally a live webinar, the podcast is presented by canSERV consortium members Saba Abdulghani, Jens Habermann, Vitor Martin Dos Santos, Enzo Medico, Manuela Pausan and Pauline Audergon. 

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.

Meet Eva Ortega-Paino who, until recently was National Node Director for Spain. This episode profiles her career which has taken her to Secretary General for Research, Ministry of Science, Innovation and Universities, Spain.

Spain joined BBMRI-ERIC as an observer three years ago and Eva was their first Director based at the Spanish National Platform for Biobank and Biomodels - Instituto de Salud Carlos III.

Eva was far from new to biobanking, having already been involved with BBMRI Sweden. In fact, Eva’s career spans 32-years; it started with a PhD in Chemical Sciences and includes experience across several sectors - academic research, healthcare, industry and the third sector. 

As she settles into her role at the Ministry, we thought it would be a good time to explore her achievements and hear her advice for young researchers.

Further reading:

BBMRI Spain: https://www.isciiibiobanksbiomodels.es/en/

BBMRI Podcast: https://www.bbmri-eric.eu/bbmri-eric/bbmri-eric-podcast/

Eva’s Ministry profile page: https://www.ciencia.gob.es/en/Ministerio/Altos-cargos/Secretaria-general-de-investigacion.html

Ministry of Science, Innovation and Universities: https://www.ciencia.gob.es/en/

The EBW Congress highlights cutting-edge biobanking innovations and research. Held over four days, it featured expert workshops, keynotes, over 85 oral and 140 poster presentations from across the biobanking community.

This episode features the State-of-the-Art speech delivered by Dr. Bo Franzén, Senior Researcher at Cancer Centre Karolinska of the Karolinska Institutet, during the Quality Management and Pre-Analytics session. 

About Karolinska Institutet

Karolinska Institutet is one of the world’s leading medical universities. Karolinska Institutet accounts for the single largest share of all academic medical research conducted in Sweden and offers the country’s broadest range of education in medicine and health sciences. The Nobel Assembly at Karolinska Institutet selects the Nobel laureates in Physiology or Medicine.

The tilte of Dr. Franzén’s talk is: ‘Minimally invasive fine needle aspiration-based molecular diagnostics in support of precision cancer medicine’ and it was delivered in the Hofburg’s Zeremoniensaal.

Resources

Karolinska Institutet: https://ki.se/en

Minimally invasive fine needle aspiration-based molecular diagnostics in support of precision cancer medicine: https://pubmed.ncbi.nlm.nih.gov/38519839/

Europe Biobank Week 2024 – Day Three: https://www.europebiobankweek.eu/ebw24live/ebw24-live-congress-radio-europe-biobank-week-2024-day-three/

Europe Biobank Week Podcasts: https://www.europebiobankweek.eu/tag/podcast/

The EBW Congress highlights cutting-edge biobanking innovations and research. Held over four days, it featured expert workshops, keynotes, over 85 oral and 140 poster presentations from across the biobanking community.

Keynotes are an opportunity to hear from leading experts in the field. This episode features the second keynote of the congress, delivered by Dr Gillian Bartlett, Associate Dean for Graduate Research Education, University of Missouri and Co-Director of the SOM Umbrella PhD Program.

About underrepresented populations

The title of Dr. Bartlett’s talk is ‘Biobanking with Underrepresented Populations: The Critical Role of Participant engagement’ and it was delivered to a packed plenary hall. Dr. Bartlett underscores the importance of including still underrepresented populations in medical research with examples from e.g., the All of Us research programme.

Resources

All of Us Research Programme: https://allofus.nih.gov/

Dr. Gillian Bartlett EBW24 news article: https://www.europebiobankweek.eu/ebw24live/ebw24live-dr-gillian-bartlett-university-of-missouri-delivers-keynote-lecture-ii-biobanking-with-underrepresented-populations-the-critical-role-of-participant/

Short interview at EBW24:

https://www.europebiobankweek.eu/ebw24live/ebw24-live-congress-radio-europe-biobank-week-2024-day-three/

Europe Biobank Week Podcasts: www.europebiobankweek.eu/tag/podcast/

The EBW Congress highlights cutting-edge biobanking innovations and research. Held over four days, it featured expert workshops, keynotes, over 85 oral and 140 poster presentations from across the biobanking community.

Keynotes are an opportunity to hear from leading experts in the field. This episode features the first keynote that was delivered by Sir Rory Collins, Principal Investigator and Chief Executive of UK Biobank.

About UK Biobank

The biobank involves 500,000 participants and it is the largest deeply characterised prospective study available for any type of health research that is in the public interest. More than 30,000 researchers worldwide currently use it and generated more than 3000 papers in 2023 alone.

The title of Prof. Collins' talk is ‘UK Biobank: scale, depth, duration … but, most importantly, accessibility’ and it was delivered to a packed plenary hall.

We interviewed Sir Rory to ask what he hoped delegates would take from his talk. You can find that piece within day two of #EBW24 Congress Radio found at europebiobankweek.eu. 

Resources

UK Biobank: www.ukbiobank.ac.uk

Sir Rory Collins EBW24 abstract: www.europebiobankweek.eu/ebw24-previews/ebw24-previews-keynote-with-sir-rory-collins/

Europe Biobank Week Podcasts: www.europebiobankweek.eu/tag/podcast/

This is part two of a two part podcast which shares impact stories from across BBMRI-ERIC’s Member States and communities that were presented at the BBMRI-ERIC 10th anniversary workshop. Each story highlights the diverse expertise and significant impact of the research infrastructure that our community helps shape and benefits from.

In this episode, you will hear impact stories from Quality Management and Biobanking Development, presented by Andrea Wutte, Head of BBMRI QM, and Saba Abdulghani, Head of BBMRI Biobanking Development.

You will first meet Lila Kallio, Auria Biobank Director and Marialuisa Lavitrano, National Node Director of BBMRI Italy. 

Then you will hear impact stories from Katerina Novakova, representing BBMRI Czech Republic and Maria Judit Molnar, National Node Director of BBMRI Hungary. 

Listen to part one to hear stories from our IT Service and ELSI services and research.  

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

Europe Biobank Week Congress is happening in Vienna, Austria from 14-17 May 2024. You’ll hear a flavour of the event and key interviews with organisers, speakers and delegates. 

EBW is the most important event of the year for the global biobanking community. The congress highlights cutting-edge biobanking innovations and research by featuring keynote presentations, panels and workshops. 

This episode features contributions from:

• Prof. Josef Haas, Medical University Graz
• Naila Loudini, UMC Utrecht
• Nikolai Pace, University of Malta 
• Congress delegates: Stefan Kummer - VetBiobank, Julia Huber - Universitätsklinikum Freiburg - CCCF-Biobank, Massimiliano Borsani - CNR - BBMRI.it and Nhutuyen Nguyen - German Biobank Node

See you next year in Bologna, Italy, for #EBW25?

More information:

• EBW: europebiobankweek.eu 
• Twitter: twitter.com/BiobankWeek
• LinkedIn: www.linkedin.com/company/europe-biobank-week 

Europe Biobank Week Congress is happening in Vienna, Austria from 14-17 May 2024. You’ll hear a flavour of the event and key interviews with organisers, speakers and delegates.  

EBW is the most important event of the year for the global biobanking community. The congress highlights cutting-edge biobanking innovations and research by featuring keynote presentations, panels and workshops. 

This episode features contributions from:

• Dr. Ayat Salman, ESBB
• Dr. Gillian Barlett, Associate Dean for Graduate Research Education at the School of Medicine at the University of Missouri 
• Congress delegates - Michael Neumann and Marthe Bierens
• Poster and oral presenters - Annemieke De Wilde, Emanuel Sander, Andrea Wutte, Rogier van der Stijl and Bo Franzén

More information:

• EBW: europebiobankweek.eu 
• Research All of Us: www.researchallofus.org
• Minimally invasive fine needle aspiration-based molecular diagnostics in support of precision cancer medicine : https://pubmed.ncbi.nlm.nih.gov/38519839/
• Twitter: twitter.com/BiobankWeek
• LinkedIn: www.linkedin.com/company/europe-biobank-week 

Europe Biobank Week Congress is happening in Vienna, Austria from 14-17 May 2024. You’ll hear a flavour of the event and key interviews with organisers, speakers and delegates. 

EBW is the most important event of the year for the global biobanking community. The congress highlights cutting-edge biobanking innovations and research by featuring keynote presentations, panels and workshops. 

This episode features contributions from:

• Professor Martin Polaschek, Austrian Federal Minister of Education Science and Research 
• Sir Rory Collins, Principal Investigator and Chief Executive of UK Biobank 
• Dr Annelies Debucquoy and Dr Ronny Baber, EBW24 Programme Committee members
• EBW24 congress delegates
• Francesca Trapani, Scientific Director/ Group Leader presso Boehringer Ingelheim
• Kirsten Tief-Kuery, Sales Leader Genetic Analysis EMEA, Thermo Fisher Scientific 
• The Lerchenfeld Quartett 

More information: www.europebiobankweek.eu

Twitter: twitter.com/BiobankWeek

LinkedIn: www.linkedin.com/company/europe-biobank-week 

The Lerchenfeld Quarter: lerchenfeldquartett.com

Europe Biobank Week Congress is happening in Vienna, Austria from 14-17 May 2024. You’ll hear a flavour of the event and key interviews with organisers, speakers and delegates. 

EBW, organised by BBMRI-ERIC and ESBB, is the most important event of the year for the global biobanking community. The congress highlights cutting-edge biobanking innovations and research by featuring keynote presentations, panels and workshops. 

This episode features Prof. Jens K Habermann, BBMRI-ERIC Director General, and Dr. Ayat Salman, ESBB President, who discuss the significance of the congress. You will also hear from Roland Leiminger and Rolf Morselt who are steering committee members and facilitate sponsorship support of the congress.

More information: www.europebiobankweek.eu

Twitter: twitter.com/BiobankWeek

LinkedIn: www.linkedin.com/company/europe-biobank-week 

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 

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 

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.

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.

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.

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. 

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 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.

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/

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. 

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.  

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 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

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