Beyond 1 Million Genomes (B1MG)

The B1MG project website is being developed and will be available soon.

The Beyond 1 Million Genomes (B1MG) consortium will provide coordination and support to the 1+ Million Genomes initiative (1+MG), which is based upon the commitment of 21 European Member States and Norway that have signed the Declaration ‘Towards access to at least 1 million sequenced genomes in the EU by 2022’. Collectively, these countries have committed to establishing a cross-border federated network of national genome collections associated with phenotypic data, consented for advancing health and medicine practices across Europe. Europe is uniquely placed to take on this challenge and position itself as a global leader in this field.

B1MG will go ‘beyond’ the 1M genome target and ‘beyond’ the 21 signatory countries. The project will collaborate with an array of international initiatives and consult a range of stakeholders to support the creation of a pan-European genome-based health data infrastructure, encompassing data quality and exchange standards, access protocols and legal guidance.

Recommendations will be translated to a B1MG maturity level model that provides concrete guidance on the steps required to implement personalised medicine, a healthcare approach that takes into account a person’s genetic make-up, at local, regional and national-scale.

Personalised medicine is expected to bring significant socio-economic benefits, including more efficient national health systems. Faster and more accurate diagnosis, the development of pharmacogenomics and advancement of preventative medicine will lead to better health, quality of life of patients and increased life expectancy. This will be captured in a methodology for economic evaluation, forming the basis of future business-cases for implementation in the health sector.

A diagram showing how the project is organised

Project objectives

Objective 1

To engage local, regional, national and European stakeholders to define the requirements for cross-border access to genomics and personalised medicine data.

Objective 1 Key Results (addressed by WP1 and WP6):

  • B1MG assembles key local, national, European and global actors in the field of Personalised Medicine within a B1MG Stakeholder Coordination Group (WP1) by ​M6​.
  • B1MG drives broad engagement around European access to personalised medicine data via the B1MG Stakeholder Coordination Portal (WP1) following the B1MG Communication Strategy (WP6) by ​M12​.
  • B1MG establishes awareness and dialogue with a broad set of societal actors via a continuously monitored and refined communications strategy (WP1, WP6) by ​M12, M18, M24 & M30.​
  • The open B1MG Summit (​M18​) engages and ensures that the views of all relevant stakeholders are captured in B1MG requirements and guidelines (WP1, WP6).

Objective 2

To translate requirements for data quality, standards, technical infrastructure, and ELSI into technical specifications and implementation guidelines that captures European best practice.

Objective 2 Key Results (addressed by WP2, WP3 and WP4):

  • Legal and ethical:
    • Establish relevant best practice in ethics of cross-border access to genome and phenotypic data (WP2) by ​M36.
    • Analysis of legal framework and development of common minimum standard (WP2) by ​M36​.
    • Cross-border Data Access and Use Governance Toolkit Framework (WP2) by ​M36​.
  • Technical:
    • Quality metrics for sequencing (WP3) by ​M12​.
    • Best practices for Next Generation Sequencing (WP3) by ​M24​.
    • Phenotypic and clinical metadata framework (WP3) by ​M12, M24 & M36.
    • Best practices in sharing and linking phenotypic and genetic data (WP3) by ​M12 & M24.
    • Data analysis challenge (WP3) by ​M36.
  • ​Infrastructure:
    • Secure cross-border data access roadmap (WP4) by ​M12​ & ​M36​.
    • Secure cross-border data access demonstrator (WP4) by ​M24.

Objective 3

To drive adoption and support long-term operation by organisations at local, regional, national and European level by providing guidance on phased development (via the ​B1MG maturity level model​), and a methodology for economic evaluation.

Objective 3 Key Results (addressed by WP5 and WP6):

  • The ​B1MG maturity level model​ (​ WP5) by ​M24​.
  • Roadmap and guidance tools for countries for effective implementation of Personalised Medicine (WP5) by ​M36​.
  • Economic evaluation models for Personalised Medicine and case studies (WP5) by ​M30​.
  • Guidance principles for national mirror groups and cross-border Personalised Medicine governance (WP6) by ​M30​.
  • Long-term sustainability design and funding routes for cross-border Personalised Medicine delivery (WP6) by ​M34​.