News
1+MG / B1MG Stakeholder Forum held on 13 October 2022
The Beyond 1 Million Genomes (B1MG) project supports the EU's 1+ Million Genomes Initiative (1+MG) by bringing together diverse stakeholders to collectively create the infrastructure, the legal guidance and the best practices to enable this access.
In October, we held the last stakeholder forum organised by the B1MG project. This meeting centred on identifying how stakeholders could contribute to the scale up and sustainability of the B1MG efforts. Along with updates on progress to date (the 1+MG Trust Framework, the Maturity Level Model and industry engagement), highlights of the the day included a panel discussion on industry engagement and parallel workshops to consider scale up and sustainability in the context of rare disease, cancer, common and complex disease, infectious disease and Genome of Europe (GoE).
You can find more information about the event at the following link.
Should you have any questions regarding the event, please contact b1mg-coordination@elixir-europe.org.
Experts debate secure access to genomic health data in Europe
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.
2021 B1MG Stakeholder Meeting
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.
2021 B1MG General Assembly
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
Country visit videos now online
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 project deliverables published
Five deliverables from the project have just been published:
Posted 7 June 2021
New B1MG newsletter released
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.
Read the April 2021 newsletter
Don't forget you can stay in touch by subscribing to our newsletter.
Posted 8 April 2021
Professor emeritus Gert-Jan van Ommen (1947-2020)
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 B1MG Stakeholder Portal launches
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:
- Citizens and patient organisations
- Clinicians, medical specialists
- Academics
- Medicines authorities (EU/EMA and national level)
- HTA bodies
- Funders
- Industry (diagnostic, pharmaceutical, ICT)
- National policy/decision makers
- Infrastructures
- EU Joint Actions
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:
- Join some of the project workshops (as external experts).
- Act as an early reviewer, and review the initial drafts of the project recommendations.
- Act as a validator, and review the mature draft of the project outputs.
- Get access to relevant documents for the project.
- Be linked to other relevant actions and activities at a pan-European level.
Posted 19 October 2020
The Beyond 1 Million Genomes project begins
The B1MG project launched in June 2020. See the news story on the ELIXIR website.
Posted 4 June 2020
Events
The table below shows the events planned for the duration of the project. Details will be announced closer to the date of each event.
Date |
Name |
WP |
Organiser |
October 2022 |
1+MG / B1MG Stakeholder Forum Outcome: Panel discussion on industry engagement; Contribution from stakeholders to scale up and sustainability of B1MG efforts; Updates on progress to date(MLM and 1+MG Trust Framework). If you have any questions about this event, please contact b1mg-coordination@elixir-europe.org.
Registration
Deadline:
Wed 12 October 2022, 1200 hrs (CET) Please click here to register |
WP1 |
1+MG/B1MG |
November 2021 |
B1MG Stakeholder Forum Outcome: Open consultation with internal and external stakeholders; set out the 1+MG Trust framework; alignment of Stakeholders and Partner Projects with the B1MG Use Cases. |
WP1 |
ELIXIR Hub |
June 2020 |
B1MG Kick-off Outcome: All the project board mobilised. Review and agree plan for the year ahead. |
WP6/All |
ELIXIR Hub |
October 2020 |
Framework Stakeholder Coordination Roundtable Outcome: Stakeholders engagement: requirements, consultation, validation. |
WP1 |
EAPM |
January 2021 |
B1MG Personalised Medicine Delivery (country visit) Outcome: Capacity building, Mirror Groups and sustainability. |
WP5, WP6 |
University of Tartu |
March 2021 |
B1MG Secure Cross-Border Technical infrastructure Outcome: Synthetic human datasets for safe cross- border testing. |
WP4 |
Uppsala University |
April 2021 |
B1MG Personalised Medicine Delivery. Country Visit 2 Outcome: Capacity building, Mirror Groups and sustainability. |
WP5, WP6 |
ELIXIR Hub |
October 2020 |
B1MG Personalised Medicine Delivery. Country Visit 3 Outcome: Capacity building, Mirror Groups and sustainability. |
WP5, WP6 |
INSA |
June 2021 |
B1MG Secure Cross-Border Technical infrastructure
B1MG-OG F2F meeting Outcome: Security on federated data access processes. |
WP4, WP6 |
CSC |
June 2021 |
B1MG ELSI Stakeholder Workshop Outcome: Security on federated data access processes. |
WP2 |
ECRIN |
September 2021 |
B1MG Personalised Medicine Delivery. Workshop 1 Outcome: Capacity building: B1MG Maturity level model, indicators, processes. |
WP5, WP6 |
INSA |
September 2021 |
Framework Stakeholder Coordination Roundtable Outcome: Stakeholders engagement: requirements, consultation, validation. |
WP1 |
EMBL |
September 2021 |
B1MG Secure Cross-Border Technical infrastructure Outcome: Synchronicity between regulation and technology. |
WP4 |
CNRS |
November 2021 |
B1MG Personalised Medicine Delivery. Workshop 2 Outcome: Capacity building: Harmonising economic evaluation models. Sustainability. |
WP5, WP6 |
DTL Projects |
November 2021 |
B1MG Summit Open event B1MG GA meeting Outcome: Open consultation with internal and external stakeholders; GA meeting. Review and agreed plan for the second half of the project; EC review meeting. |
WP6 (All) |
ELIXIR Hub |
November 2021 |
Framework Stakeholder Coordination Roundtable Outcome: Stakeholders engagement: requirements, consultation, validation. |
WP1 |
EAPM |
December 2021 |
B1MG EC review meeting Outcome: Review project progress and preparation for the B1MG summit and the mid-term review;
EC review meeting. |
WP6 (All) |
ELIXIR Hub |
January 2022 |
B1MG-OG F2F meeting Outcome: Review EC feedback. Review and agree a plan for the second-half of the project. |
WP6 (All) |
ELIXIR Hub |
March 2022 |
B1MG Secure Cross-Border Technical infrastructure Outcome: Identify the barriers: existing cross-border data discovery and access solutions. |
WP4 |
CRG |
September 2022 |
B1MG Secure Cross-Border Technical infrastructure Outcome: Interfaces for cross-border interoperable services. |
WP4 |
University of Milan |
December 2022 |
Framework Stakeholder Coordination Roundtable Outcome: Stakeholders engagement: requirements, consultation, validation. |
WP1 |
EMBL |
March 2023 |
B1MG Secure Cross-Border Technical infrastructure Outcome: Healthcare and genomes - capacity building for Europe. |
WP4 |
University of Ljubljana |
June 2023 |
B1MG Final Review Outcome: Final project review meeting. |
WP6 (All) |
ELIXIR Hub |
Find out more