BBMRI-ERIC Podcast

BBMRI-ERIC
BBMRI-ERIC Podcast

A podcast that tells the latest success stories and innovations from across the European biobanking and biomolecular resources landscape.

  1. 26 - ELSI Dialogues: Artificial Intelligence in South-Eastern Asia - The Indonesian National Artificial Intelligence Strategy on Ethics and Policy

    20/12/2024

    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.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/

    33 min
  2. 25 - ELSI Dialogues: Communicating with patient citizens on implementing the European Health Data Space (EHDS)

    06/11/2024

    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” This episode 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 this 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

    38 min
  3. 22 – Congress Radio Special: Europe Biobank Week 2023 – Dr Bo Franzén

    20/08/2024

    22 – Congress Radio Special: Europe Biobank Week 2023 – Dr Bo Franzén

    Welcome to this Europe Biobank Week Congress Radio special. It recorded live from the Europe Biobank Week Congress that happened in Vienna, Austria from 14-17 May 2024. 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/

    26 min
  4. 21 - Congress Radio Special: Europe Biobank Week 2024  - Dr Gillian Bartlett, University of Missouri

    06/08/2024

    21 - Congress Radio Special: Europe Biobank Week 2024 - Dr Gillian Bartlett, University of Missouri

    Welcome to this Europe Biobank Week Congress Radio special. It was recorded live at the Europe Biobank Week Congress that happened in Vienna, Austria from 14-17 May 2024. 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/

    57 min
  5. 20 - Congress Radio Special: Europe Biobank Week 2024  - Sir Rory Collins, UK Biobank

    23/07/2024

    20 - Congress Radio Special: Europe Biobank Week 2024 - Sir Rory Collins, UK Biobank

    Welcome to this Europe Biobank Week Congress Radio special. It recorded live from the Europe Biobank Week Congress that happened in Vienna, Austria from 14-17 May 2024. 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/

    1 h 5 min

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A podcast that tells the latest success stories and innovations from across the European biobanking and biomolecular resources landscape.

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