Webinar on "Gendered Innovations: The Importance of Gender in Biomedical Research"
Join BBMRI-ERIC ELSI for an exciting 2-hour webinar on gender in biomedical research, featuring two outstanding speakers. When? On Tuesday 30th November 2021, 17:00 CET.

Part 1) Gendered Innovations in Biomedicine 
Speaker: Londa Schiebinger 
John L. Hinds Professor of History of Science 
Director, Gendered Innovations in Science, Health & Medicine, Engineering, and Environment 
Stanford University 

Part 2) Title TBA
Speaker: Sabine Oertelt-Prigione 
Chair of gender in primary and transmural care at the Radboud University in Nijmegen, the Netherlands 
Professor of sex- and gender-sensitive medicine at the University of Bielefeld, Germany
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Artificial intelligence (AI) systems and big data analytics in biobanking are essential components to deliver improved individual care and contribute to the global disease burden reduction. They are also among central elements that contribute to the transformation of biobanking and data sharing practices, shed light on existing biobank research challenges, and highlight new tensions pertaining to individual and societal values, rights, and ethical principles, as well as established research governance practices and structures.

BBMRI-ERIC and the editors, Michaela Theresia Mayrhofer (PhD, BBMRI-ERIC), Signe Mežinska (Professor, University of Latvia) and Santa Slokenberga (LL.D., Uppsala University, Nordic Permed Law) welcome submissions on the ethical, legal, social, gender, and governance issues that artificial intelligence poses in biobanking, including but not limited to: 

• Transformation of biobanking and associated challenges, e.g. new and enhanced approaches of scientific research, data and sample flows and the role of scientists, and emerging tensions in the field; 

• Challenges and conflicts attributed to individual and societal values, rights, norms, and ethical principles, including questions relating to gender, race, and equality, vulnerability as well as participant recruitment and informed consent; 

• RRI, scientific quality, and ethical review; 

• Governance and regulation of AI systems in biobanking, ethics by design and default, ethics oversight and accountability.   

Please email your abstract (500 words) by 16 November 2021 to contact@bbmri-eric.eu.  
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Melanie Goisauf will chair the session Ethics of Artificial Intelligence. This session will focus on the ethical and societal issues that we are facing with the increased presence of AI and ML in many aspects of our lives and of medical practices. A particular attention will be given to interventions focusing on the social contexts in which algorithms are designed and the ethical, legal, and societal implications of their application in biomedicine. 

In this session, two other researchers from the ELSI Unit will present their papers: Ilaria Colussi will present "How to control risks of AI applications in health care and health research?” and Mónica Cano Abadía will talk about “Artificial intelligence and gender bias in biomedicine”.  

Sara Casati will be co-presenting with Bridget Ellul “Biobanking with children: towards a shift in practice” during the session Paediatric Biobanking. Michaela Th. Mayrhofer will be giving a talk entitled “Where are we on the Code of Conduct for Health Research?” in the session Regulatory Implications. Additionally, she will be co-chairing the Ethics Café. The format of an Ethics Café provides an opportunity to share views on specific topics in an informal setting. A debate is kick-started by a provocative opening statement or an engaging talk. The audience is invited to participate, ask questions, provide new insights for an ultimately thought-provoking dialogue. 

Kaya Akyüz will also chair a session, in the format of a workshop, that will tackle the ethical issues that can arise from incidental findings in biomedical research involving human subjects.  

ELSI Services & Research is also thrilled to submit a poster on their newly revamped Knowledge Base (to be released soon!); Caitlin Ahern will be presenting the poster during this session. The ELSI Knowledge Base is an open-access resource platform containing information on ELSI-related matters relevant to biobanking. The biobanking community will find practical guidance on specific ELSI topics and common challenges. The new Knowledge Base will soon be launched, we will keep you posted.

Participant engagement aims to maintain the interest of participants in the study and encourage their participation and commitment over its lifetime. European cohorts are gradually developing participant engagement strategies including innovative tools for recruitment and informed consent collection, data collection and ongoing communication with, and involvement of, participants.  

At this digital workshop, the strategies of key European cohorts were presented and discussed, and experiences exchanged. The cohorts that participated in the workshop are ALSPAC, Born in Bradford, NINFEA (Nascita e INFanzia: gli Effetti dell'Ambiente), VIKING GENES, Geração 21, and Generation Scotland. To finish a very lively second session, Isabelle Budin Ljøsne presented the work she conducted mapping participant engagement strategies in European cohorts.  
 

The 7th African Conference on One Health and Biosecurity takes place on the 27th-29th of October 2021. The annual conference is one of the biggest biosecurity conferences in Africa, which attracts over 400 global experts from all the world's continents. The conference is organised by the Global Emerging Pathogens Treatment Consortium (GET), which was established in 2014 as a direct response to the 2014-16 Ebola virus disease outbreak in West Africa and ongoing outbreaks of Lassa Fever, Meningitis, Multidrug resistance (MDR) enteric fevers and Yellow Fever across the sub region. BBMRI has been part of GET conferences over the past years; a collaboration that started in the context of the B3Africa Project (2015-2018, GA  654404). 
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BBMRI-ERIC is represented by Dr. Michaela Th. Mayrhofer with a talk on “Rapid Responses: Biobanking in Pandemic Times” building on examples from within the Pan-European Research Infrastructure BBMRI-ERIC, its National Nodes and its global partners. Secondly, it will draw conclusions as regards to the practice of biobanking, data and sample quality, findability of resources and challenges for governance and the ethical, legal and societal implications.  

 

Stakeholder Forum
  

Outcome of the Stakeholder Forum - Patients' pillar workshop on Trusted Research Environment

On October 18, 2021, the workshop “Building a Trusted Research Environment”, evolved from discussion between Austrian National Node, Stakeholder Forum Patient Pillar and BBMRI-ERIC’s HQ, took place virtually. Over 50 attendees from the Stakeholder Forum, national nodes, the biobanking community and patients’ organizations all over Europe have gathered to built up a fruitful discussion on creating Trusted Research Environments (TREs) for data-sharing in health research, outlining the current landscape and contexts, and showing examples of good practice.
The invited speakers came from different areas, in order to give rise to an interdisciplinary dialogue, which led to underline the importance of patients’ engagement, transparency, data infrastructure literacy, responsibility, sustainability, confidentiality. The notion of  ‘trusted consent instead of ‘informed consent’ was developed too. Science communication and education, as well as the technical aspects as to how to design a TRE were described.

"Meet the Patient Advocates" - Join us at Europe Biobank Week 2021 on 10 November!
During #EBW21, we organise a workshop entitled “Meet the Patient Advocates”, held on November 10th at 8.30-9.30. Even if you are not registered for the conference, you can still watch it as it will be broadcast here. The Workshop is an innovative step for #EBW21 and for the Patient Pillar of the Stakeholder Forum, it will also will give you the opportunity to meet some experienced Patient Advocates and members of BBMRI-ERIC's Stakeholder Forum's Patient Pillar. Do you need some Quality Assurance from Advocates on your work, or perhaps a bit of Patient Problem-Solving on a challenge that you face, or maybe you just want to talk over an idea or an approach in a Trusted Workshop Environment?
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