A national infrastructure for personalised medicine has been in great demand by doctors, researchers and not least patients. With a Danish National Genome Center in operation, at least 60,000 patients can receive a genetic analysis as part of a more targeted treatment of the individual patient over the next three years.
The joint effort between regions and the state means that the genetic analysis will be of the same high quality, and the same strong data protection is ensured regardless of where in Denmark the patient is treated.
Minister for Health Magnus Heunicke states:
“Danish patients deserve the best treatment, and the treatment of the future is more precise and targeted at the patients' genetic conditions, also called personalised medicine. It is therefore important that we already today have a Danish National Genome Center to carry out these genetic analyses of the highest quality, which in the future will provide an improvement in treatment for many patients. The Danish initiative is unique because we have decided that personalised medicine and the genetic analyses from day one must go directly to patients and contribute to a more accurate diagnosis and treatment. Children and young people with rare diseases will be the first to benefit from our Danish genome centre.”
Extensive genetic analysis, including e.g. whole genome sequencing, combination of data and the use of material from biobanks are part of the realisation of more personalised medicine for Danes. The overall purpose is to be able to diagnose diseases better, so that the treatment can be targeted to the individual patient. It can help increase the effectiveness of the treatment and reduce side effects or prevent disease. In 2018, a broad majority of the Danish Parliament decided, on the basis of thorough discussions, that Denmark should establish a Danish National Genome Center. In the agreement, the parties in the Danish Parliament emphasised that patients had their right of self-determination strengthened. This means that patients must give written consent to patient treatment, which involves a genetic analysis. They must decide what feedback they want, and they must have information about the self-determination they have over their genetic information. The patient can decide that their genetic information in the Danish National Genome Center may only be used for their own treatment and e.g. not for research.
The model for a Danish National Genome Center focuses on Denmark maintaining public control over the fact that data is stored under the highest security. The use and storage of patients' information must be safe, secure and framed through legislation.
After several years of intensive work, a new secure high-technology infrastructure is now available to all of the hospitals in Denmark - this ensures that all patients have equal access to the new opportunities, no matter where they live.
Chair of Danish Regions, Stephanie Lose, states:
"In the regions, we have put a lot of effort into being able to offer Danish patients an examination of the entire genome, as part of the diagnostic study. Therefore, we are also proud that as part of a joint Danish initiative, we can ensure that at least 60,000 Danish patients will be offered a whole genome examination. This will ultimately benefit many more patients across the country and not least strengthen the personal treatment. In order for the analyses to actually reach the patients and contribute to more accurate diagnoses and treatment from day one, it requires a great deal of effort from all of us - whether you are a clinician, researcher or public authority. Among other things, the regions are working to establish the regional data support centres, so that clinicians and researchers, for example, can more easily get advice on safe use of health data and thus support the ambition of a faster path from analysis to more personalised medicine."
The model for a Danish National Genome Center
The Danish National Genome Center houses both an advanced national sequencing centre, which has laboratory facilities in Eastern and Western Denmark, in Copenhagen and Aarhus respectively and a high-technology, secure supercomputer system. The National Sequencing Center carries out the actual mapping - also called the sequencing - of patients' genetic material. The supercomputer is necessary to process the large amounts of data, which a mapping of a person’s genetics, called the genome, consists of. Genome data is saved and stored in a national database under strict security. Many countries around Denmark also have genome centres and strategies for personalised medicine and build infrastructures for that purpose.
“We are experiencing great international interest in the model for a Danish National Genome Center, because we have a truly unique starting point for being able to provide answers to current and future patients. Firstly, based on genome data, we have had to diagnose and treat patients from day one. Secondly, we have strong legislation and national support under the Danish Ministry of Health as well as a national strategy for personalised medicine. Thirdly, in Denmark we have a strong tradition of collecting data in health registers and biobanks” says Bettina Lundgren, CEO of the Danish National Genome Center, and continues:
“We also have the support and demand from both patients, doctors and researchers, and the historically high donation from the Novo Nordisk Foundation means that Denmark has the opportunity to accelerate the development of personalised medicine. With this in mind, Denmark has the opportunity to give many patients an improvement in treatment that they might not otherwise have received until many years from now. That is why I am very happy that we are starting to be able to benefit the patients right now.”
Read the Danish Strategy for personalised medicine 2021-2022
Children and young people with rare diseases is the first patient group
The first patient group to benefit from the infrastructure is children and young people with rare diseases. Rare diseases are one of the many areas where a comprehensive genetic analysis can really make a difference. The likelihood of making a diagnosis improves with the new national system, and the health professionals who treat rare diseases already have experience working with complex genetic data.
This is followed by 12 selected and overall patient groups. The 12 patient groups are chosen by professionals and decision-makers from 72 professional proposals, where a total of 34 proposals are selected and grouped in the 12 patient groups. Before the 12 patient groups can be offered comprehensive genetic analysis via the Danish National Genome Center, a number of national, advisory specialist networks must work to prepare the patient group for the national infrastructure. The specialist networks consist of members appointed by the regions and The Organization of Danish Medical Societies (LVS) as well as representatives from The Danish Clinical Quality Program– National Clinical Registries (RKKP) and Danish Patients. This is followed by a new round of proposals with a view to including more patient groups in the national infrastructure.
See the first selected patient groups here
What can the development of personalised medicine mean for patients?
- Doctors can gain a better understanding of diseases, and thus patients will receive better treatment
- Patients can receive more accurate diagnoses and ensure better prevention of hereditary diseases in the family
- Doctors may limit the use of treatments that do not work, and thus patients will experience fewer side effects
- Doctors can be more confident that the treatments offered to the patient work for the specific disease
About the Danish National Genome Center
- In December 2016, the government and Danish Regions launched a national strategy for personalised medicine. A central element of the strategy was the establishment of a Danish National Genome Center to ensure that a number of initiatives from the strategy are implemented. The strategy was updated in 2021 and expires in 2022.
- In May 2018, the law establishing the Danish National Genome Center was passed by all parliamentary parties with the exception of the Red-Green Alliance.
- On 1 May 2019, the Danish National Genome Center was established as a new agency under the Danish Ministry of Health.
- In December 2019, the Novo Nordisk Foundation granted DKK one billion to kick start the Danish National Genome Center and pay for the centre's infrastructure and the first 60,000 genetic analyses for Danish patients.
- The government has also continued the Danish National Genome Center's grant on the Finance Act 2021 to co-finance the work with personalised medicine.
Contact
For further information please contact Head of Communications Grith Enemark, ghe@ngc.dk, +45 2063 4891