Information to citizens

The Danish National Biobank is part of Statens Serum Institut (SSI). Here, biological samples are stored securely so that they can be used for improved patient treatment, disease prevention and a strengthened health research.

Read more about the different types of samples, how they are used, and why they are important for both you and society.

Updated 11 November 2025

SSI_Biobanken_ansat-med-rullebord-med-prver — Watch the animated film: Why the biobank stores samples from you

Samples contribute to better treatment, prevention and research

The biological samples in The Danish National Biobank are a unique resource. They help doctors and researchers understand why disease occur, how it develops – and how we can improve diseade prevention and treatment.

When researchers compare samples from thousands of individuals, they can discover patterns that provide new knowledge about diseases. This knowledge can lead to earlier diagnoses, more targeted treatment and better opportunities for future disease prevention.

Information for citizens whose samples are stored in The Danish National Biobank

As a citizen, you will receive an information letter from Statens Serum Institut (SSI) if we have received a sample from you for analysis in the SSI's central laboratory within the past month.

The sample may come from a test you have had taken at your general practitioner or at a hospital. On sundhed.dk, it is stated under each of your test results where the sample has been analysed.

If you are registered with The National Database of Non-Consent to the Use of Tissue Samples for Scientific Purposes, you will still receive SSI’s information letter, in order that you are informed about SSI's processing of personal data and your rights.

Read more about SSI's processing of personal data about you on www.ssi.dk/information-about-processing-of-personal-data under the section "Has a sample from you been analysed by the SSI?"

If you have received the SSI information letter and have questions about its contents, please write to SSI via Digital Post. See how to contact us here: Contact us.

Why are samples stored in the Danish National Biobank?

Where do the biological samples come from?

The Danish National Biobank stores biological samples from several different sources. Some samples are surplus material from samples that have already been used in connection with analyses at Statens Serum Institut (SSI). Other samples come from research projects where citizens have chosen to donate biological material for research. In addition, the DNB provides freezing facilities for other institutions that need secure storage of samples.

Surplus biological material

SSI acts as a central laboratory for the Danish healthcare system and performs analyses for hospitals and general practitioners. When SSI has analysed a sample in order to make a diagnosis, biological material may in some cases be left over. The surplus material may be stored in the Danish National Biobank.

The purpose of storage is to keep the sample available, if your doctor later assesses that a new analysis is necessary in order to make the correct diagnosis. In some cases, the material can also be used for research. Please read more below under "What are the samples used for?".

If you have had a sample taken in the healthcare system, information about the analysing lab can be found under each test result on sundhed.dk.

Research samples

The samples in the Danish National Biobank can also originate from various research projects where citizens voluntarily chose to donate biological material for research, e.g. for research in the Danish National Birth Cohort.

SSI provides freezer capacity

In addition, the Danish National Biobank stores samples on behalf of other institutions that are data controllers for the samples. In such cases, the SSI provides safe storage in the Danish National Biobank's advanced freezer facilities.

Why is SSI allowed to store biological samples?

Statens Serum Institut (SSI) has a number of public authority tasks that contribute to protecting and improving public health. This includes diagnostics, prevention and control of infectious diseases as well as other tasks for the benefit of public health.

In order to perform these tasks, SSI is permitted to process and store biological samples as well as the information associated with the samples. The basis for this is described in section 222 of the Danish Health Act.

SSI is data controller for the vast majority of the samples (and the associated data) stored in the Danish National Biobank and is therefore responsible for ensuring that the material is processed safely and legally. In cases where the Danish National Biobank stores samples where other institutions are data controllers, agreements have been entered into to ensure safe and legal storage.

You can read more about how and on what legal basis SSI processes personal data below, under "Has a sample from you been analysed by SSI?" on this page: Information about processing of personal data

What are the samples used for?

The samples in the Danish National Biobank are used to improve patient treatment, prevent and combat infectious diseases and strengthen health and disease research.

Patient treatment

When Statens Serum Institut (SSI) analyses samples as a central laboratory for the Danish healthcare system, sometimes biological material is left over after analysis. This material may be stored in the Danish National Biobank, so that your doctor – if the need arises – can have a new analysis carried out to find out what is wrong or to confirm a diagnosis. In these cases, SSI only looks at viruses or microorganisms in the sample.

Prevention and control of communicable diseases

In accordance with section 222 of the Danish Health Act, SSI is tasked with preventing and combatting infectious diseases in Denmark. In order to do this, SSI may need to analyse viruses or microorganisms in the samples. This helps researchers and authorities discover new variants of diseases, such as when the PCR test was adapted to new COVID-19 variants. The analyses can also be used to find out when and how a serious disease outbreak has started.

Research

Surplus biological material from samples analysed by SSI as a central laboratory may be used for research under certain conditions. Firstly, the person from whom the biological material has been drawn must not be registered in The National Database of Non-Consent to the Use of Tissue Samples for Scientific Purposes (read more below under "I do not want samples from me to be used for research - what do I do?"). In addition, the specific research project must be approved by a Research Ethics Committee. The Danish National Biobank's Scientific Advisory Committee then decides whether the biological material can be handed over to the specific research project. If the research project is not carried out at SSI, the disclosure of the excess biological material to the researcher must also be approved by the Danish Data Protection Agency.

Your rights

What are my rights?

If SSI stores samples from you in the Danish National Biobank, you have a number of rights. Among other things, you have the right to know which samples are involved, and you can ask for the samples to be destroyed.

Read more about how to exercise your rights below. You can also read more about SSI's processing of personal data here: Information about processing of personal data.

You have the right to complain to the Danish Data Protection Agency about SSI's processing of personal data about you. You will find the Danish Data Protection Agency's contact information on their website here: www.datatilsynet.dk/english/contact-us

How do I find out if SSI stores samples from me?

If you want to know whether the Danish National Biobank stores samples from you, you can request access by contacting SSI by Digital Post.

When logged in to Digital Post, select "Statens Serum Institut" as the recipient, and then “Borgerhenvendelser” ("Citizen Inquiries").

If you are exempt from Digital Post or prefer to contact us by physical mail, you can send a letter to:

Statens Serum Institut
Att.: Citizen Inquiries
Artillerivej 5
2300 Copenhagen S

You can expect to hear from us within one month from the date of reception of your inquiry.

What kind of personal data does SSI process about me?

SSI processes a number of different personal data about the citizens from whom the Danish National Biobank stores samples.

First, SSI processes information about the sample collection itself. For example, it can be information about the type of sample (blood, saliva or similar) and where the sample was taken. We also process general personal data about you, such as your name and your civil registration number. When a sample is analyzed, information can also be derived, for example about your health.

SSI is responsible for the National Biobank Register, which makes it possible to link information about biological samples with data from various Danish registers for use in research. This could be information about gender, date of birth and place of birth from the CPR register, as well as information from the National Patient Register about disease diagnoses, treatments and any hospital admissions.

Read more about the kind of personal data SSI processes about you: Information about processing of personal data

I do not want samples from me to be used for research – what do I do?

If you do not want samples from you to be used for research, you must register with The National Database of Non-Consent to the Use of Tissue Samples for Scientific Purposes ("Vævsanvendelsesregistret"). Once you have registered, samples from you can no longer be handed over to research projects.

The registration applies to all samples from you that have been taken in connection with treatment in the healthcare system, including samples that may be stored in Danish biobanks other than the Danish National Biobank.

Samples that you have given as a participant in a research project can still be used for research, even if you register in The National Database of Non-Consent to the Use of Tissue Samples for Scientific Purposes. If you do not want such samples to continue to be used for research, you must contact the specific research project directly.

Read more and register with The National Database of Non-Consent to the Use of Tissue Samples for Scientific Purposes on the Danish Health Data Authority's website: www.sundhedsdatastyrelsen.dk/data-og-registre/nationale-sundhedsregistre/vaevsanvendelsesregisteret (in Danish only).

What do I do if I want samples from me to be destroyed?

If you wish to have biological samples from you destroyed, please contact SSI via Digital Post or by mail. Read more here: Contact us
You can expect to hear from us within a month of receipt of your inquiry.

Please note that samples from you (e.g. the heel blood sample) may be important for diagnosing and treating you, and that destroyed samples cannot be recreated. If you are considering the destruction of samples because you specifically want the samples not to be used for research, you can instead register with The National Database of Non-Consent to the Use of Tissue Samples for Scientific Purposes - see the above question.

If you have specific questions about the heel blood test/PKU test, please contact the SSI Department of Congenital Diseases. Read more on the department's website here: Screening of newborns - Information in other languages

Can I be informed about the research projects that samples from me have been handed over to?

No, when a sample from you is used for research, i.e. used solely for scientific or statistical purposes, the so-called right of access is limited.

The right of access is the right to gain insight into how personal data about you is processed – for example, what information is found, where it originates from and to whom it is disclosed.

Even though the right of access is limited, you may receive information from a researcher that samples from you will be included in a specific research project. This happens because the researcher in some cases may be obliged to inform you – see also under the next question.

Will I be asked if samples from me can be used for research?

Research projects that use biological samples must be approved by a research ethics committee. When the Research Ethics Committee approves a specific research project, they will in some cases assess that you need to be informed about a new research project and possibly give your consent. In other cases the Committee will assess that it is not necessary to contact you.

If you are registered with The National Database of Non-Consent to the Use of Tissue Samples for Scientific Purposes, samples from you cannot be handed over to research. Read more about the register on the Danish Health Data Authority's website: www.sundhedsdatastyrelsen.dk/data-og-registre/nationale-sundhedsregistre/vaevsanvendelsesregisteret (in Danish only)

About the storage of samples

For how long does SSI store samples in the Danish National Biobank?

There is no specific storage period for the different types of biological samples in the Danish National Biobank. The oldest samples in the Danish National Biobank are from the 1970s. However, all types of samples are kept only for the period judged necessary for patient treatment, prevention and control of infectious diseases, or during which they have statistical or scientific value.

Some samples are stored for a long time, for example heel blood samples (PKU samples) from newborns, which are stored for the use and benefit of the child and the family on a long term bases.

Other samples are stored for as long as the samples are necessary for the performance of SSI's official duties. SSI will often need to store samples that are several decades old. This may be necessary in order to allow SSI to go back in time and look at how viruses and bacteria made people sick in the past compared to today.

When samples are no longer necessary for SSI's official tasks and also do not have statistical or scientific value, they will be destroyed.

Can biological samples be released to insurance companies or the police?

Samples cannot be given to insurance companies nor be used for forensic purposes in order to identify criminals.

The biological material stored has occasionally been used for medical identification of victims, mainly in connection with accidents, for example in connection with the tsunami in Asia in 2004. At that time it was not possible to identify Danes based on body parts alone. With the help of a court order the relevant heel blood sample/PKU cards were retrieved, and a genetic analysis was able to establish the identity of Danish victims.

Does the Danish National Biobank make money by handing out biological samples?

No. The operation of the Danish National Biobank is financed by a national budget appropriation. The disclosure of samples for research is free of charge, unless the samples need to be processed in a specific way. In such cases, payment covers the costs associated with the processing of the samples.