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Providing access to genomic data to improve research, policy making and healthcare across Europe Passed

Thursday May 16, 2024 08:35 - 08:50 F1

Lecturer: Anna Hagwall

Track: The European Health Data Space; a health specific ecosystem

The European Genomic Data Infrastructure (GDI) is dedicated to facilitate secure federated cross-border access to high-quality genomic and phenotypic data for research, personalized medicine and policy making. The presentation introduces the project and highlights the progress achieved by the GDI consortium, with a focus on the technical advancements.

GDI will enable the European 1+ Million Genomes (1+MG) initiative, which is a member state driven project to provide access to genomic data. 1+MG is supported by EU projects, part of EU’s Digital Europe program. Nationally, several Swedish stakeholders at relevant authorities are engaged in the progress of 1+MG and GDI as part of a reference group. Furthermore, genomic data will be an important component in the European Health Data Space (EHDS) to enable personalized medicine.

GDI project partners have developed and implemented an initial software stack, a so-called “starter kit”, that will enable secure access to genomic data across borders. The starter kit uses open-source applications and components which adhere to global standards, enhancing overall interoperability.

A demonstration has shown that it is possible to access synthetic human genomic data through the GDI technical solution. Currently, the software components are enhanced and more security measures taken to enable secure access to real data, and implement the infrastructure as soon as the national organizations and legislations permit.

Since GDI aims to realize the ambitions of the 1+MG initiative, the project will create a virtual cohort consisting of genomes representing the population of Europe, collected in a related project. Also, attention is brought to cancer and infectious disease use cases.

Language

English

Topic

Data Governance

Seminar type

Live broadcast

Lecture type

Presentation

Objective of lecture

Orientation

Level of knowledge

Introductory

Target audience

Management/decision makers
Politicians
Organizational development
Healthcare professionals

Keyword

Actual examples (good/bad)
Benefits/effects
Innovation/research

Conference

Vitalis

Lecturers

Profile image for Anna Hagwall

Anna Hagwall Lecturer

Project manager and Head of human data
National Bioinformatics Infrastructure Sweden (NBIS)

Project manager and Head of human data at NBIS
Leadership roles in international collaborations for accessing human genomic data
Background in agile leadership in software development projects in the medtech/biotech industry