A new ELIXIR-coordinated European project has been recently launched. Called “Beyond One Million Genomes” (B1MG) and funded by Horizon 2020, it aims to support the implementation of the 1+ Million Genomes initiative. This initiative is a declaration of cooperation “towards access to at least 1 million sequenced genomes in the EU by 2022”, to ultimately improve disease prevention, personalised treatment and clinical research. Twenty-two countries work together to ensure that this objective is met, and ELIXIR-Luxembourg plays a major role in the new B1MG project to ensure ethical, legal and societal compliance.
Until now, several European countries have been working on the 1+ Million Genomes initiative, but without the benefit of a formal coordination. The B1MG project provides structure and expertise to support the European initiative, carried by the governments of 22 countries, and enable them to move ‘beyond’ the 1M genome target. It will bring together key infrastructures, sequencing projects, member state representatives, and the voices of diverse stakeholders including patients. By doing so, the project will ensure data quality, high exchange standards, secure access protocols and excellent legal guidance.
Important role for ELIXIR Luxembourg
Within this project, ELIXIR-LU - hosted by the LCSB - is leading the work package dedicated to the establishment of a legal, ethical and socially acceptable framework for secure sharing of genomics data across Europe. The group will scrutinise and aim to solve ethical and legal challenges related to the cross-border nature of such a broad genomic infrastructure. The initial focus will be on several applications on cancer, rare diseases as well as common and complex disorders.
Last year, Dr Regina Becker, Strategy Advisor for ELIXIR-LU, co-authored a roadmap paper in Nature Reviews Genetics focusing on the 1+ Million Genomes initiative. The article identified the challenges of data sharing across borders and demonstrated that European research infrastructures are well-positioned to support the rapid implementation of widespread genomic data access.
The ELIXIR-LU team, together with experts from all over Europe, will start identifying existing solutions and relevant stakeholders in order to adapt and further develop existing ethical standards, analyse the legal landscape that affects a cross-border genome initiative and create a pool of tools to centrally govern the infrastructure needed for data sharing.
A platform for optimal cross-border collaboration
To ensure that society obtains the maximum benefit in a safe and ethical way, the B1MG project needs to ensure optimal cross-border collaboration and safe access to sensitive data. This is why ELIXIR-LU is also contributing to develop a better understanding of the technical challenges involved in building a federated secure cross-border infrastructure in line with the ethical and legal requirements, and for optimal interoperability of clinical and genomics data.
Significant societal impact and benefits for research
This three-year project will have a significant impact on society, as it will offer clear guidance to implement personalised medicine, at a local, regional, national and European scale. Personalised medicine, which considers people’s genetic makeup, can yield notable socio-economic benefits, such as more efficient national health systems, as well as faster and more accurate diagnosis. Access to larger cohorts across Europe will also provide a richer pool of data for researchers studying genetic diseases. A better integration between sequencing research data and electronic health records could also help clinicians to make informed decisions on the best patient-specific treatments. “The benefits to science and society of large-scale genome sequencing projects are immense, and the B1MG project will chart a path to ensure technical specifications and guidelines exist to grant data access across Europe”, underlines Serena Scollen, B1MG Project Coordinator.
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