FAQ about biobanks

A biobank may only store your biological samples and data if you have given your consent or have not objected to their storage. If you later decide to withdraw your consent or object to continued storage, you can notify the biobank, and your stored samples and data will be destroyed.

However, any biological samples and data that have already been used for research will continue to be retained for as long as necessary for the studies in which they have been used.

No. There is no legal basis that allows the police or public prosecutor to demand access to biological samples stored for scientific research as part of a criminal investigation.

The joint position of all Dutch University Medical Centers (UMCs), the Dutch biobanks, and the Royal Dutch Medical Association (KNMG) is that the judicial authorities should not have access to tissue stored for scientific research or healthcare purposes, neither now nor in the future. The medical duty of confidentiality applies fully to the further use of biological samples and associated data. For secondary use of biological samples and data the medical duty of confidentiality applies in full. 

People are made up of cells. Billions of them! Our skin, our organs, our blood: every part of our body is made of cells. Hidden inside every cell is DNA.

Your DNA (deoxyribonucleic acid, but you don't need to remember that) contains the instructions that make you who you are. It is like a blueprint that describes many of your characteristics, such as your eye colour, hair, and height. You inherit your DNA from your parents. Sometimes, however, the blueprint contains small changes or errors. These can include inherited genetic disorders. If your DNA contains such a change, your body may develop slightly differently than it otherwise would.

The opposite can also be true. Your DNA may contain genetic variations that are beneficial. For example, they may make it more likely that you will live to an old age or less likely that you will develop a particular disease.

The building blocks of your genes and DNA can tell researchers a great deal about you. But why do researchers need a biobank containing biological samples from so many different people? The answer is actually quite simple. If researchers only have the DNA of one person, they cannot tell whether it is the same as, or different from, that of other people.

Researchers can only discover whether someone has a genetic predisposition to a disease by comparing the DNA of many healthy people with that of many people who have the disease. The differences they find may point to possible causes of that disease. Notice that we say may. In science, researchers must always be careful not to draw conclusions too quickly! The more biological samples available for comparison, the greater the chance of discovering meaningful patterns or associations

Your medical record contains information related to your care and treatment, such as test results, X-rays, and referral letters or correspondence with your general practitioner (GP) or medical specialist. Your healthcare provider is legally required to maintain this medical record.

In most cases, healthcare providers store this information in an electronic health record (EHR). The contents of an electronic health record are the same as those of a paper medical record. However, an EHR can be accessed more quickly and easily, and it is also simpler to share with other healthcare providers—for example, when a patient is referred to a specialist at another hospital.

For more information, see ‘Het hergebruik van gezondheidsgegevens in Nederland’. 

No. Biobanks treat your data confidentially, and your privacy is protected in several ways, including by coding your data. This means that your biological samples and health data are stored under a unique code. This helps prevent mix-ups and ensures that you cannot be directly identified.

The code also ensures that researchers and their collaborators do not have access to your personal information, such as your name or address. Your biological samples, any information collected through questionnaires, your health data, and the associated code may be stored indefinitely. This allows researchers to carry out future studies and to investigate how diseases develop and progress over time.

When we share data and biological samples with other hospitals or companies, this is always done without your name being included. Research results are published in reports and scientific journals, but your name is never mentioned.

Companies and health insurers may also conduct, or commission, scientific research that can help improve healthcare. If this research meets all applicable requirements, they may also use coded biological samples and data from a biobank. Here too, they do not have access to your personal information, such as your name and address.

For more information, see “Does the researcher know who I am?”

In Europe, your privacy is protected by a law that applies in all countries within the European Economic Area. Everyone is required to comply with this law.

This law does not apply in countries outside the European Economic Area. These countries each have their own privacy laws. When biobanks share your coded biological samples and data with countries outside the European Economic Area, they will take every possible measure to protect your privacy as effectively as possible.

Almost all Dutch biobanks are located in hospitals, particularly in University Medical Centers (UMCs), where a great deal of medical scientific research is carried out. The hospital funds these biobanks using resources allocated for medical scientific research.

In other cases, a biobank is established by a dedicated institute or a collaborative partnership. An example of this is the Lifelines study.

Most (large) population-based biobanks receive government funding. Financial support for biobank research is also provided by ZonMw and the National Research Agenda. In addition, biobanks receive funding from charities and patient organisations.

In some cases, companies may provide financial contributions because they benefit from the work and results generated by a biobank.

The challenge for researchers is not only to establish a biobank, but also to maintain it over the long term. This requires funding through medical scientific research budgets and grants, or by asking researchers who use the biological samples to contribute an amount that covers the costs.

Participation in a biobank does not involve any additional costs for you.

You do not receive any immediate personal benefit from participating in a biobank. However, future research may generate valuable insights that can benefit people who have the same condition or disease. You will not receive information about the specific types of research for which your biological samples and health data are used. The researcher conducting the study does not have access to your personal information.

For more information, see “Does the researcher know who I am?”.

Scientific research combines data from many people. It is not intended to search for information about individual patients. However, in some cases, medical scientific research may reveal a finding that could be important for your (future) health or the health of your relatives. This is known as an “incidental finding.” For example, it could be a genetic change that increases the likelihood of developing a particular disease.

Hospitals have procedures in place for what should happen if such an incidental finding is discovered. Your doctor or general practitioner will inform you if necessary. However, some patients prefer not to receive this type of information. At some biobanks, you can indicate that you do not wish to be informed about incidental findings, at other biobanks, this option is not available. In that case, you may consider not making your biological samples available for research.

Scientific research involving your biological samples and health data is carried out with great care. Applicable rules and regulations are followed, and the research is reviewed by an accredited medical research ethics committee.

If you participate in medical scientific research, you do not need to learn or be able to do anything in advance.

However, patients are increasingly involved as advisors or partners in medical scientific research. Depending on the role a patient takes on, training may be useful. Such training can offer several benefits, including increasing patients’ knowledge, expertise, and ability to contribute effectively, thereby strengthening the impact of patient involvement.

Large patient organisations sometimes have the opportunity to provide training for their own members. There are also external (international) training programmes, such as those offered by EUPATI and Eurordis. In the Netherlands, patients can also gain more knowledge through the PGO Support Academy.