Romania to be part of European genomics initiative "1+Million Genomes"

10 May 2023

Romania will be part of the European initiative "1+Million Genomes," which aims to enable secure access to genomics and corresponding clinical data across Europe for better research, personalized healthcare, and health policy development.

24 EU countries, the United Kingdom, and Norway have signed the declaration on intensifying efforts to create a European data infrastructure for genomic data and implementing common national standards to allow access to federated data. The initiative is part of the EU agenda for the digital transformation of health and healthcare and is aligned with the objectives of the European Health Data Space, according to G4Media.

Among the objectives of the signatory countries are: ensuring the availability of adequate technical infrastructure throughout the EU to allow secure and combined access to genomic data; ensuring that the ethical and legal implications of genomics are clear and taken into account; ensuring that the general public and decision-makers in the member states and signatory countries are well-informed about genomics to ensure its adoption and integration into personalized healthcare.

1+MG is one of the largest projects of its kind in the world and contributes primarily to establishing global standards in this field. Connection to the European Health Data Space will provide an additional boost to the potential for information for researchers, healthcare professionals, and all citizens, ultimately, according to the European Commission.

To fulfill the objectives of the 1+MG Declaration, signatories are carrying out the 1+ million genomes initiative along a two-stage roadmap that details their activities across four dimensions: governance, trust framework, infrastructure, and data.

In the first stage, the Horizon 2020 project "Beyond 1 Million Genomes" (B1MG) supports and operationally coordinates the implementation of the roadmap, leading to an agreement on creating infrastructure, legal and technical guidelines, data standards, requirements, and best practices to enable data access. This will support clinicians in pursuing personalized medicine, bringing benefits to patients and enhancing the efficiency of health systems.

The Genomic Data Infrastructure (GDI) project was launched in November 2022, co-financed under the Digital Europe program, marking the beginning of the expansion and sustainability phase of the 1+MG initiative. It will establish a federated data infrastructure for genomic and clinical data throughout Europe, enabling distributed learning for various use cases. The project will also develop and implement a comprehensive communication strategy aimed at informing citizens and ensuring their trust, which is an essential prerequisite for the success of this endeavor.

The Genome of Europe is a multinational project designed and coordinated with the support of B1MG. It brings together European countries to build a European network of high-quality national genomic reference cohorts that are representative of the European population. All countries involved generate a national reference genomic dataset based on their own national population cohort, generated through whole genome sequencing, all in accordance with the jointly established guidelines on "1+MG protection". Each country's dataset will form a unique, stand-alone national reference collection.

Together, interconnected through the 1+MG initiative, the national collections will establish a world-class European reference data resource (the Genome of Europe) for research and innovation in healthcare.

radu@romania-insider.com

(Photo source: Artem Egorov | Dreamstime.com)

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Romania to be part of European genomics initiative "1+Million Genomes"

10 May 2023

Romania will be part of the European initiative "1+Million Genomes," which aims to enable secure access to genomics and corresponding clinical data across Europe for better research, personalized healthcare, and health policy development.

24 EU countries, the United Kingdom, and Norway have signed the declaration on intensifying efforts to create a European data infrastructure for genomic data and implementing common national standards to allow access to federated data. The initiative is part of the EU agenda for the digital transformation of health and healthcare and is aligned with the objectives of the European Health Data Space, according to G4Media.

Among the objectives of the signatory countries are: ensuring the availability of adequate technical infrastructure throughout the EU to allow secure and combined access to genomic data; ensuring that the ethical and legal implications of genomics are clear and taken into account; ensuring that the general public and decision-makers in the member states and signatory countries are well-informed about genomics to ensure its adoption and integration into personalized healthcare.

1+MG is one of the largest projects of its kind in the world and contributes primarily to establishing global standards in this field. Connection to the European Health Data Space will provide an additional boost to the potential for information for researchers, healthcare professionals, and all citizens, ultimately, according to the European Commission.

To fulfill the objectives of the 1+MG Declaration, signatories are carrying out the 1+ million genomes initiative along a two-stage roadmap that details their activities across four dimensions: governance, trust framework, infrastructure, and data.

In the first stage, the Horizon 2020 project "Beyond 1 Million Genomes" (B1MG) supports and operationally coordinates the implementation of the roadmap, leading to an agreement on creating infrastructure, legal and technical guidelines, data standards, requirements, and best practices to enable data access. This will support clinicians in pursuing personalized medicine, bringing benefits to patients and enhancing the efficiency of health systems.

The Genomic Data Infrastructure (GDI) project was launched in November 2022, co-financed under the Digital Europe program, marking the beginning of the expansion and sustainability phase of the 1+MG initiative. It will establish a federated data infrastructure for genomic and clinical data throughout Europe, enabling distributed learning for various use cases. The project will also develop and implement a comprehensive communication strategy aimed at informing citizens and ensuring their trust, which is an essential prerequisite for the success of this endeavor.

The Genome of Europe is a multinational project designed and coordinated with the support of B1MG. It brings together European countries to build a European network of high-quality national genomic reference cohorts that are representative of the European population. All countries involved generate a national reference genomic dataset based on their own national population cohort, generated through whole genome sequencing, all in accordance with the jointly established guidelines on "1+MG protection". Each country's dataset will form a unique, stand-alone national reference collection.

Together, interconnected through the 1+MG initiative, the national collections will establish a world-class European reference data resource (the Genome of Europe) for research and innovation in healthcare.

radu@romania-insider.com

(Photo source: Artem Egorov | Dreamstime.com)

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