Governance for the infrastructure for Personalised Medicin

With the 2025 economic agreement, the Government and Danish Regions have agreed on the financial framework for the continued collaboration on the national infrastructure for personalized medicine. Additionally, a new collaboration structure has been agreed upon, as described below.

The process of selecting representatives for the various forums in the new governance structure is already underway and is expected to be completed during the first quarter of 2025.

The Board must ensure the overall management of the future operation of the genome database and its storage within the infrastructure for personalised medicine.

Furthermore, the purpose is to ensure managerial and business anchoring among stakeholders, guaranteeing ongoing validation of the technical setup and expenses related to the infrastructure in the DNGC.

The Scientific Council aims to advise the National Board for the operation of the genome database on the development and future-proofing of comprehensive genetic analysis in the medium and long term.

The Council must maintain a broad network and collaboration on comprehensive genetic analyses and the development of the genome database. This includes ensuring that whole-genome sequencing services are carried out consistently and with high quality across the healthcare system, both now and in the future.

The purpose of the working group is to ensure advisory input and involvement of the regions in the ongoing operation and development of the National Genome Database.

It advises the NGC and supports its work in relation to the National Board for the operation of the genome database.

The working group’s purpose is to ensure advisory input and dialogue from relevant stakeholders regarding the DNGC’s operation and the development of research infrastructure associated with the genome database. This includes ensuring that relevant regional and university stakeholders are involved in activities related to research.

The International Advisory Board is tasked with advising on genomics and technical infrastructure in the development of personalised medicine.

Additionally, it will act as an external and independent advisory partner, providing guidance on the development of technological infrastructure. It must ensure that experiences from national and international initiatives are communicated and shared.

The National Advisory Board for Patients, Citizens, and Ethics is responsible for advising on ethical considerations related to personalised medicine. It will also provide guidance on awareness-raising and transparency-enhancing initiatives, as well as significant ethical considerations and dilemmas.