BBMRI-ERIC Podcast

• 27 - ELSI Dialogues: The Nagoya Protocol applied to Biobanks

  “It’s not a secret to anybody that the biodiversity is decreasing on all continents, and this implies a lot of important issues for the day-to-day life of human beings. For a sustainable use of the biodiversity and benefit sharing, the Nagoya protocol was adopted.”(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.shtmlThe Nagoya protocol at the Leibniz Institute DMSZ website: https://www.dsmz.de/collection/nagoya-protocolSharing nature’s genetic resources by the EC: https://environment.ec.europa.eu/topics/nature-and-biodiversity/sharing-natures-genetic-resources_enELSI Dialogues on Youtube: https://www.youtube.com/watch?v=aZA1rVT75toELSI services: https://www.bbmri-eric.eu/elsi/

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• 26 - ELSI Dialogues: Artificial Intelligence in South-Eastern Asia - The Indonesian National Artificial Intelligence Strategy on Ethics and Policy

  “AI systems need to be human centric, they should serve humanity and the common good” 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.pdfIndonesia’s strategy for Artificial Intelligence: https://www.mfat.govt.nz/assets/Trade-General/Trade-Market-reports/Indonesias-National-Strategy-for-Artificial-Intelligence-July-2023.pdfELSI Dialogues on Youtube: https://www.youtube.com/watch?v=TSrgDBZUUDQ&list=PLIu6KJ19npXy_HLjqtxNuXrB1XkADjWzPELSI services: https://www.bbmri-eric.eu/elsi/

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• 25 - ELSI Dialogues: Communicating with patient citizens on implementing the European Health Data Space (EHDS)

  “Without the patient citizen’s data, there is no future for research.”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.euSpanish Research Council: csic.es/en/csicEuropean Patient’s Forum: eu-patient.euELGA: elga.gv.atKristiania University: kristiania.no/en/about-kristiania/employees/school-of-communication-leadership-and-marketing/departement-of-communication/audra-diers-lawson/CPME: cpme.euEFPIA: efpia.euDigital Europe: digitaleurope.orgFrench Health Data Hub: www.health-data-hub.fr/FINData: findata.fi/en/MyGenome Portal: portaal.geenidoonor.ee/sisselogimineGerman Portal for Medical Research Data: medizininformatik-initiative.de/en/medical-research-request-health-data-centrallyHealth Data Lab: healthdatalab.deHIQA: hiqa.ie/about-usEHDS - European Commission: health.ec.europa.eu/ehealth-digital-health-and-care/european-health-data-space_en

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• 24 - canSERV: Training the Next Generation of Cancer Researchers

  Episode 24 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 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.

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• 23 - Eva Ortega-Paíno profile: “You cannot be a proper researcher without curiosity and curiosity is not only just for science, it’s for living.”

  “You cannot be a proper researcher without curiosity and curiosity is not only just for science, it’s for living.”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.htmlMinistry of Science, Innovation and Universities: https://www.ciencia.gob.es/en/

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