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Home  - News & Events Overview  -  New Podcast Episode – ELSI Dialogues: Access and benefit-sharing of Genetic Resources – the Nagoya Protocol applied to biobanks  
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New Podcast Episode – ELSI Dialogues: Access and benefit-sharing of Genetic Resources – the Nagoya Protocol applied to biobanks

This article is 300 words – a two-minute read.

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.

BBMRI-ERIC Podcast
36 – Strengthening Biobanks through Patient & Public involvement – A BBMRI-ERIC Stakeholder Forum webinar
byBBMRI-ERIC

Engagement and involvement are not possible if you don't have trust. (Sara Rebbling)

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

36 – Strengthening Biobanks through Patient & Public involvement – A BBMRI-ERIC Stakeholder Forum webinar
36 – Strengthening Biobanks through Patient & Public involvement – A BBMRI-ERIC Stakeholder Forum webinar
23 February 2026
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35 – ELSI Dialogues: Trustworthy by Design: Ethics, Practice and Impact of AI in Cancer Research and Care
17 December 2025
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34 – Ángel Álvarez-Prado profile: “I think it was game changing in my career. It was just a once in a lifetime experience.”
18 September 2025
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33 – ELSI Dialogues: Empowering Voices – Enhancing Patient Engagement in Oncology Research
9 July 2025
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32 – Congress Radio: Europe Biobank Week 2025 – Day Four – Ethics Café, a winning pitch and closing thoughts
17 May 2025
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31 – Congress Radio: Europe Biobank Week 2025 – Day Three – Participants, Posters and EP PerMed
16 May 2025
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30 – Congress Radio: Europe Biobank Week 2025 – Day Two – Scientific Programme Launch
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29 – Congress Radio: Europe Biobank Week 2025 – Day One – Workshops
13 May 2025
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28 – ELSI Dialogues: Navigating the Future: Legal and IT Challenges, Risks, and Opportunities of AI in Biobanking
8 May 2025
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27 – ELSI Dialogues: The Nagoya Protocol applied to Biobanks
13 March 2025
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26 – ELSI Dialogues: Artificial Intelligence in South-Eastern Asia – The Indonesian National Artificial Intelligence Strategy on Ethics and Policy
20 December 2024
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25 – ELSI Dialogues: Communicating with patient citizens on implementing the European Health Data Space (EHDS)
6 November 2024
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24 – canSERV: Training the Next Generation of Cancer Researchers
3 October 2024
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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.”
23 September 2024
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22 – Congress Radio Special: Europe Biobank Week 2023 – Dr Bo Franzén
20 August 2024
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21 – Congress Radio Special: Europe Biobank Week 2024 – Dr Gillian Bartlett, University of Missouri
6 August 2024
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20 – Congress Radio Special: Europe Biobank Week 2024 – Sir Rory Collins, UK Biobank
23 July 2024
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19 – 10th anniversary impact stories – part two
8 July 2024
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18 – Congress Radio: Europe Biobank Week 2024 – Day Four
19 May 2024
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17 – Congress Radio: Europe Biobank Week 2024 – Day Three
16 May 2024
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16 – Congress Radio: Europe Biobank Week 2024 – Day Two
15 May 2024
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15 – Congress Radio: Europe Biobank Week 2024 – Day One
14 May 2024
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14 – 10th anniversary impact stories – part one
15 April 2024
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13 – Prof. Walter Ricciardi on an urgent case for science: “For the first time, the dams that shaped our security are trying to break.”
19 March 2024
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12 – How canSERV can accelerate your cancer research
4 December 2023
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11 – ELSI Dialogues: Organoids – Scientific, ethical and regulatory aspects
15 November 2023
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10 – ELSI Dialogues: The Incorporation of Sex and Gender in Medical Research
31 October 2023
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“It’s not a secret for 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.”

At the heart of the agreement stands 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.

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.

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

One of the main challenges is to change 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
  • The Swiss Institute of Bioinformatics: https://www.sib.swiss/
  • The Swiss Biobanking Platform: https://swissbiobanking.ch/
  • ELSI Dialogues on Youtube: https://www.youtube.com/watch?v=aZA1rVT75to
  • ELSI services: https://www.bbmri-eric.eu/elsi/

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