On 17 and 18 of November 2021, the B1MG project spent two full days debating the plan for secure cross-border access to genomic health data in Europe. The project organised a stakeholder meeting coupled with its General Assembly to align with stakeholders needs and review the project's trajectory for 2022.
Over the coming weeks, a review of the points discussed during the meetings will be publicly released. Based on these outcomes, the project will shape, emphasise and reformulate tasks and activities into 2022.
With approximately 300 attendees, the meeting strived to strengthen the alignment amongst stakeholders and the 1+MIllion Genomes Initiative (1+MG) efforts.
Parallel workshops for each use case (rare diseases, cancers, common and complex diseases, infectious diseases, industry and the Genome of Europe) enabled specific recommendations and feedback from these specific stakeholder groups on elements of the 1+MG Trust Framework.
As a result, attendees could better understand the 1+MG trust framework and the diverse aspects being tackled. Many of the participants’ words to describe these efforts demonstrate the impact and importance of the project’s work: ethics, collaboration, cooperation, together, transparency, common goal, standards and security.
The General Assembly gathered all Work Packages (WPs) into one virtual room to kick-start the meeting with the progress on the stakeholder engagement strategy, highlighting the previous Stakeholder Meeting as an important achievement and one that should be emulated later in 2022.
Other key topics discussed included ethical, legal and social implications (ELSI), national diversity in legal aspects, infrastructure, standards and quality guidelines, clinical and research data access requirements, personalised medicines and societal impact, health technology assessment framework, sustainability, national mirror groups and training.
A focus space was also provided to discuss each WP topic in smaller online rooms. The exchange between experts from different Work Packages across all conversations proved useful for aligning efforts, understanding different perspectives and ensuring all activities are fed into the overarching 1+MG roadmap.
Posted 30 November 2021
Over the last few months B1MG project partners virtually visited three countries with well-established genomic medicine programmes: the UK, Estonia and Finland.
The video of these visits are now online. See the Resources section.
The visits aimed to better understand how to implement genomic medicine in healthcare across Europe. They also promoted knowledge exchange, with several 1+Million Genome Initiative (1+MG) member states taking the opportunity to present their progress.
The visits also included flash talks from Belgium, Bulgaria, Denmark, Hungary, Latvia, Lithuania, Portugal, Spain and Sweden.
You can also find details of the visits in the ELIXIR news story.
Posted 17 August 2021
Five deliverables from the project have just been published:
Posted 7 June 2021
The April 2021 edition of the B1MG newsletter has just been released. You can read a report from the first B1MG country visit, plus news about Denmark joining the 1+MG initiative and information about the Genome of Europe proposal.
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Posted 8 April 2021
With great sadness we learned that our admired colleague Gert-Jan van Ommen passed away last weekend, Saturday 7 November.
As Professor in Human Genetics and head of the Department of Human Genetics of Leiden University Medical Center (LUMC) from 1992-2012, Gert-Jan has greatly contributed to the Dutch and international human genetics and genomics field. He was driven by research into the biology of rare diseases, employing the most advanced technologies in research and therapy development. He inspired many international colleagues and young researchers to improve healthcare and make scientific discoveries work for patients.
Gert-Jan had a great interest in the ethical, legal and societal aspects of genome science, and in public and professional communication. He was Editor-in-chief of the European Journal of Human Genetics, has been president of the Human Genome Organisation (1998-2000) and of the Dutch (1993-2000) and European (2003-2004) Societies of Human Genetics. Beyond his personal scientific work, Gert-Jan was particularly involved in development of the national and international research infrastructure in the human genetics field, such as in the field of biobanking. Gert-Jan had a great ability to bring together people with opposing viewpoints, and he was a ‘mentor’ to many colleagues.
As a strong advocate for sharing and using genetic information, Gert-Jan has been one of the driving forces behind the Dutch participation in the European 1+ Million Genomes initiative. Despite his retirement and severe disease, he has been highly involved in the 1+MG initiative in several ways. Even until just a few weeks ago he was an active member of the 1+MG Coordination Group. Until the very end he remained committed to the 1+MG goals and process to foster European collaboration in the implementation of genome-based health.
We have lost a great, amiable man who always kept up the good spirit in conversations through a catchy phrase. We will miss him dearly.
We would like to extend our sincerest sympathy to his wife, friends and colleagues.
Posted 11 November 2020
The Stakeholder Coordination Portal is now live. The portal allows you to exchange ideas and connect to other stakeholders and Work Package leaders in the project. It is a way the B1MG Stakeholder Coordination Group can involve experts from relevant groups (see Work Package 1). The aim is to create a vibrant community that will work together to improve the project outcomes.
Stakeholders include the following groups:
If you belong to one of these groups please register. Once you have registered you will be added to the Stakeholder Portal, then you can:
Posted 19 October 2020
The B1MG project launched in June 2020. See the news story on the ELIXIR website.
Posted 4 June 2020
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The table below shows the events planned for the duration of the project. Details will be announced closer to the date of each event.