The German National Cohort (NAKO) is participating in the European ‘Genome of Europe’ project. As part of this, genetic data is collected – with the participants’ informed consent – and around 10,000 genomes are fully sequenced. The data is added to a joint European reference database designed to map genetic diversity in Europe. The aim is to use this data in medical research to improve the diagnosis, treatment and prevention of diseases.
What is the Genome of Europe project about?
The Genome of Europe project is establishing a shared ‘reference framework’ for genetic information. To this end, a database comprising at least 100,000 genomes is being created, designed to reflect the genetic diversity of the European population as accurately as possible. The aim is to use this data in medical research to improve the diagnosis, treatment and prevention of diseases.
The project is being carried out jointly by several partners from across Europe and is financially supported by the European Union. Half of the costs incurred in Germany are additionally co-funded by the Federal Ministry of Research, Technology and Space (BMFTR). The German National Cohort (NAKO) makes an important contribution to this project by providing data from voluntary participants.
What is a genome?
A genome refers to the entire set of genetic information of a living organism. The genome contains the complete blueprint for its development, structure and all bodily functions. In humans, this genetic blueprint is stored in the form of DNA.
What is the aim of the Genome of Europe project??
The project aims to gain a better understanding of the genetic diversity of the European population in relation to health and the development of disease. This forms the basis for ensuring that medical care and sustainable preventive measures can be provided more reliably for everyone. The findings are expected to lead to better, more precise and more accessible healthcare in Europe.
My genomic data: Share and help
Here you can find out, in simple terms, what genetic data is, what role it plays in medicine, and what it means to share it.
Why is so much data needed for the Genome of Europe project?
A large dataset is important because many genetic variants are rare and can only be reliably assessed and classified using a large amount of data. The larger and more diverse the dataset, the easier it is to identify and classify genetic differences.
Germany is set to contribute a total of 20,000 genomes, including around 10,000 sequenced samples from the NAKO.
What is the European database intended to be used for?
The European data repository is not only being set up, but is also being put through its paces. To this end, various use cases are being tested, for example:
- which rare genetic variations can influence the effects of medicines,
- whether the risk of common diseases can be assessed more accurately if data from various European studies are analysed together,
- and which laboratory methods can analyse the genome with particular accuracy and comprehensiveness.
How was the genetic data extracted from my biological sample?
As part of the consent form, you provided biological samples for scientific and health-related research purposes. Genetic information was extracted from these biological samples in the laboratory using a process known as sequencing. This involved determining the order of the building blocks of DNA – comparable to digitally transcribing a very long text letter by letter. This sequence data can then be analysed, for example to identify patterns that may be linked to the development of diseases.
How do I know if I’m part of the Genome of Europe project?
As part of the informed consent process and the information session during the second re-examination (the 10-year follow-up), you were asked whether you would consent to genetic analysis. If you agreed to this, you signed a consent form at the study centre.
A total of 10,000 genomes from all NAKO participants in the 10-year follow-up are being used for the Genome of Europe project. If you would like to know whether you are one of them, please contact your study centre, who will be able to check this for you.
You can find the contact details for the study centres here.
How is my data protected?
Genetic data is particularly sensitive because it allows conclusions to be drawn about you as a person. It is therefore strictly protected. This includes technical, organisational and legal security measures, as well as clear rules governing access to the data.
A person’s genetic information (with the exception of identical twins) is unique and is passed down from generation to generation. For this reason, your genetic data can be linked to you, or to your relatives and descendants, more easily than other medical data. This is the case even if the data is available without any directly identifying details such as names or addresses. The risk of unauthorised identification is particularly high if you have already disclosed extensive genetic data about yourself, for example by creating and publishing commercial DNA profiles for family tree research.
Access to the data within the Genome of Europe project and its partners, such as NAKO e.V., is permitted exclusively for specified research purposes and via regulated access procedures. The data will only be used if you, as a participant, have given your consent, and if the researchers’ use of the data is scientifically justified, legally permissible and compatible with the project’s data protection requirements. Despite all the measures taken, a small residual risk can never be completely ruled out; however, it is minimised as far as possible.
Who is allowed to use my genetic data?
Genetic data may only be used for clearly defined research purposes. Access rights are granted to researchers internationally in accordance with a regulated procedure that takes into account the scientific justification, the legal requirements and the data protection requirements of the project. This ensures that the use of the data is not arbitrary, but is subject to specific conditions.
Who manages my biological sample and the genetic data generated from it?
Your biological samples are managed by NAKO e. V. or the relevant NAKO facility. If sequencing is carried out by a contracted laboratory, that laboratory works on behalf of NAKO and in accordance with contractually agreed specifications. Contracted laboratories do not act as data controllers for your data.
The genetic data and research findings resulting from the sequencing are managed by the relevant NAKO institutions and NAKO e.V.
How can I use my rights as a data donor?
The Genome of Europe project processes pseudonymised data. This means that direct details such as names or dates of birth are removed, so that it is not possible to link the data directly to a specific individual.
As a participant, you have various rights under the GDPR regarding the processing of your data. These include, in particular, the right to access, rectification and erasure, as well as the right to restrict processing. You may also object to the use of your genetic data in the Genome of Europe project. To do so, please contact your study centre. They will provide you with information on the next steps.
Where can I find out about research findings?
Information on the research findings of the Genome of Europe project can be found on the official project website, as well as on the websites of the participating partners and the European Union. Depending on the topic, scientific reports and project updates may also be published there.
- Website of Genome of Europe
- You can find out more about the results of the NAKO research at www.nako.de/results