This page provides a general overview of biobanking to help answer common questions from participants in biobanks, patients, and the public.
How biobanks and research projects, working with biobanking samples and data, are organised and run can differ from one country or institute to another. These differences may be due to national laws and regulations, the requirements and guidance of Ethics Committees and other oversight bodies, the aims and methods of individual biobanks and research institutions, and the specific needs and goals of each research project/study.
The information provided in these FAQs is for general guidance only. It should not be interpreted as describing the procedures or requirements applicable in every situation.
How can I give a sample?
There are three main ways to give a sample to a biobank:
- Leftover samples from your regular care or a study: If you are already in hospital getting treatment, or if you are enrolled in a scientific study, clinicians or researchers may take blood, tissue, or other samples as part of that process. With your consent, they can take a small leftover piece of what has already been collected for clinical purposes and store it in the biobank for future research purposes.
- Samples collected during your regular care: If you are already in the hospital or clinic for treatment or a doctor’s visit, you may be invited to take part in a research study. You may also be asked to provide additional samples, such as blood or other samples, during your visit or hospital stay. With your consent, these samples would additionally be collected and stored in a biobank and may be used future research purposes.
- Volunteering to give a sample on purpose: Some biobanks also let healthy people, or anyone interested, come forward and give a sample specifically for the biobank, even if they are not in hospital or taking part in a study. Some biobanks have facilities to welcome people who wish to proactively participate. By donating, you are directly helping scientists to unlock new ways to prevent, detect, and treat illnesses. Your small act of generosity could have a huge impact, benefiting many people in the future.
What is consent?
Consent means that you choose whether to allow your samples and information to be stored and used for research in the biobank. Before you agree, you should be given clear information about the biobank, what will happen to your samples and information, how they may be used, who may be able to use them, and what choices you have. Taking part is voluntary. You can choose not to take part, and you should be told what happens if you later change your mind.
Before making a decision in either case, you should receive clear and understandable information about the types of samples and data that will be stored, how they may be used, who may have access to them, how your privacy will be protected, how long they may be stored for and how you can withdraw your consent.
What are my rights as a participant providing my samples and data to a biobank?
As a participant, you have the right to receive clear information, to ask questions before making a decision, to give or refuse consent freely, to know how your samples and data will be protected, and to withdraw your consent according to the conditions explained in your consent form and applicable law.
If I refuse the sample donation, will it affect my health care?
Sample donation is voluntary and refusing it will not affect the quality of your medical care, your relationship with healthcare professionals, or your access to treatment. You are free to decide whether or not you consent to give your samples and data for future research.
What types of samples are stored in biobanks containing human biological materials?
Biobanks may store blood, tissue, saliva, urine, or other biological materials. The type of sample stored depends on the purpose of the biobank and the consent you provide.
What will my samples be used for?
Your samples may be used to help researchers better understand how diseases develop, why they affect people differently, and how patients respond to different treatments. This research can contribute to the development of improved diagnostics, therapies, and preventive strategies.
Sometimes, your samples go toward one particular study with clear, defined goals. In that case, you may also be asked if researchers can contact you again in future. They may wish to invite you for a follow-up, ask for more information or additional samples, or even share health-related findings with you that could be relevant to your health. Whether they are allowed to do this depends on the study’s rules, the consent you gave, and the applicable laws.
In other cases, your samples and related information are stored in a biobank for future research projects, the specifics of which may not yet be known when you donate. Before any researcher can use your stored samples, they have to get their project approved by scientific, ethical, and legal reviewers. Plus, their project must stay within the boundaries of what you originally agreed to when you gave your consent.
Therefore, you will be asked to give your consent in two separate areas:
- to participate in the actual research using your samples,
- to store your samples long term in a biobank.
How your identity is protected when samples and data are used for research is explained in the sections below on anonymisation and pseudonymisation.
What is personalised medicine?
Personalised medicine, also known as precision medicine, is a way of providing healthcare that tailors treatments to patients. It considers differences between people, including their genes, lifestyle, and environment.
However, it does not usually mean creating a completely unique treatment for each patient. Instead, it often involves grouping people who share similar biological features – such as certain gene and biomarker aberrations – to help choose the treatments that are most likely to work best for them.
What do ‘anonymised’ and ‘pseudonymised’ mean?
When you give a sample for research purposes, the healthcare professional collecting it will know your name and contact details. But once your sample is stored in a biobank, your personal information is either removed or replaced with a code. This helps protect your privacy.
Your information can be handled in two ways:
- It can be anonymised, meaning all your personal details are removed so that no one can ever trace the data back to you.
- Or, it can be pseudonymised, meaning a special code is assigned to your information. This code is stored in a very secure location, so only a few authorised people can ever link the sample back to you – and even then, only in very rare, strictly controlled situations.
The benefit of pseudonymisation is that it keeps a small door open for your benefit: it allows you to be re-contacted by researchers or by clinicians if necessary.
Why might researchers and clinicians need to contact you again?
Researchers and/or clinicians might need to re-contact you in two cases:
- If a new research idea emerges that goes beyond what you originally agreed to, the researchers will always contact you first to ask for your consent.
- If, during their work, the researchers come across a discovery that could genuinely matter to your well-being or future medical care, they will inform your regular doctor or specialist. Your doctor/specialist will contact you and return results to you, if you have agreed in advance to be informed about these kinds of health discoveries and to receive the results.
Are my data duly protected?
Yes. Biobanks operate under strict ethical, legal, and data protection regulations to ensure your privacy.
How your data is protected: Your data may be stored using different levels of de-identification (anonymisation or pseudonymisation) depending on the type of data, extent of consent, storage purpose or other metrics.
For the most part, researchers do not receive any data that directly identifies you. They are legally obliged to only process the minimum data necessary to fulfil their research. Some approved studies involving re-contact may involve identifiable data, but only under very strict safeguards.
Samples and data are stored in secure facilities and protected digital systems, with access limited to authorised personnel only. All research projects using biobank samples must be reviewed and approved by ethics committees.
Will I receive any personal benefit?
The main purpose of biobank research is to improve healthcare for the wider population – future patients, families, and communities – rather than providing direct personal benefits to individual donors.
Although participants may not benefit personally from their contribution, biobank-supported research has already led to major medical breakthroughs. By contributing to biobanks, patients and participants help to accelerate discoveries that will benefit many people in the future.
By allowing your samples and data to be used, you are helping researchers to better understand diseases, develop new treatments, and improve healthcare for future patients.
However, there is one meaningful exception where you could gain a direct personal benefit. If the biobank has a policy of returning individual health findings, researchers may share important discoveries with your doctor, who can then pass them on to you. This could provide valuable, actionable insights into your own health that you would not otherwise have.
Will I receive money if the research leads to a new treatment or product?
No. Participants generally do not receive financial benefits from discoveries, patents, or commercial products developed using donated samples or data. However, such research may contribute to medical advances that benefit society.
Can I withdraw my consent?
Yes. You can withdraw your consent at any time without giving a reason. To do so, follow the instructions given in the consent form that you signed when you agreed to provide your samples and data. Once consent has been withdrawn, your data or samples will not be used for future research purposes unless another legal basis applies under applicable law. Depending on the biobank’s policies and the applicable regulations, your remaining samples and identifiable data may be destroyed, anonymised, or retained.
However, if your samples or data were already used in a completed study before you withdrew your consent, they will have become part of the research findings and cannot be removed without affecting the integrity of the findings.
Additionally, if your sample was fully anonymised from the start – meaning your name and all identifying details were permanently removed, and there is absolutely no way to trace it back to you – then it is completely untraceable and cannot be removed anymore.
Will I receive individual research results?
In most cases, you will not receive individual results from studies using your samples. In general, the outcome of research results is publicly returned via scientific publications and communications. However, if a finding of significant importance for your health emerges, some biobanks may offer to return this individual information through your clinician/healthcare provider. Whether this happens depends on the kind of study, national regulations, your prior consent, and the likelihood of linking the findings back to you.
As a general rule, individual research results are not returned to relatives of deceased participants. Any exceptions would be handled in accordance with applicable laws, ethical requirements, and the policies of the biobank.
How long will my samples be stored for?
Samples and associated data may be stored for long periods to support future research, in accordance with national and European legal and ethical requirements. Storage duration and governance policies are defined by the biobank and comply with applicable regulations. The biobank is obliged to provide you with clear information about the data storage periods before you sign the informed consent.
What will happen to my samples and data after I die?
If you as a participant pass away, your samples and related data may continue to be stored in the biobank and used for biomedical research, in accordance with the consent you provided during your lifetime, the applicable laws, and the biobank’s governance policies.
All confidentiality and security measures will remain in place to protect the participant’s information. The samples and data may continue to be used for ethically approved research purposes.
Can my samples or data be shared with researchers in other countries?
Yes, if you agree to this, biobank samples and data may be shared with qualified researchers in other countries if it is necessary for approved scientific research. Any sharing must comply with applicable ethical, legal, and data protection requirements. Appropriate safeguards are in place to protect your privacy.
Can children donate samples to a biobank?
Yes, in accordance with national laws and ethical requirements. Consent is usually provided by a parent or legal representative, and children may be asked for their agreement when appropriate. Additional consent may be required when the child reaches adulthood.
Can commercial companies access my samples or data?
Yes, if provided for in the consent, your samples and data may be used in approved research projects involving commercial companies, such as pharmaceutical or biotechnology companies. They may also be used in research carried out by universities, hospitals, and non-profit organisations.
Access requests are reviewed according to the biobank’s governance framework, which includes scientific review, ethical oversight, and legal compliance procedures. These procedures ensure that the proposed research is scientifically justified, consistent with participant consent, and in line with applicable regulations.
Therefore, if a commercial company submits a request to access samples and data, it must follow the procedures in place and must comply with the ethical, legal, and contractual requirements provided for all users.
How can scientists request my samples and data?
Scientists can request access to your samples and associated data by submitting a formal application to the local biobank. Sample collections may also be searchable through international catalogues, such as the BBMRI-ERIC Directory, where collections are listed in an anonymised way and do not contain personal data.
Access to samples is only granted to researchers whose projects meet all ethical, legal, and scientific requirements, and are consistent with the consent you have provided. They only receive anonymised or pseudonymised samples and data, ensuring that your identity is always protected.
You can find all biobanks and sample collections in the extensive catalogue BBMRI-ERIC – Directory.