Different types of biobanks

Table Of Contents

Overview  #

Biobanks are organised collections of human biological materials and associated data that are collected, processed, stored, and shared to support research, healthcare, and innovation. Biological materials may include blood, tissue, cells, DNA, RNA, saliva, urine, and other biospecimens, together with clinical, demographic, lifestyle, environmental, imaging, and increasingly genomic and digital data. 

Biobanks vary considerably in their objectives, governance, participant populations, and methods of collection. Although there is no universally accepted classification, biobanks are commonly grouped according to their primary purpose, the populations they serve, or the type of material they collect. Understanding these differences is important because each type of biobank raises distinct ethical, legal, and societal implications. 

The principal categories include: 

Population biobanks  #

    Population biobanks collect biological samples and health-related data from large groups of individuals, often representing the general population. They are primarily established to investigate disease risk factors, gene–environment interactions, public health, and disease prevention through longitudinal follow-up. 

    Population and longitudinal biobanks rely on the sustained participation of individuals over many years, or even across generations. Their scientific value depends not only on the quality of biological samples but also on the continuous collection of updated health, lifestyle, environmental, and clinical information. Maintaining participant involvement throughout the lifetime of a cohort is therefore a major challenge. Participants may gradually withdraw, fail to respond to follow-up requests, relocate, or lose interest in the study over time. Attrition is particularly common among young people, socio-economically disadvantaged populations, and ethnic minority groups, potentially affecting both the representativeness of the cohort and the validity of research findings. Consequently, modern biobanks increasingly view participants not simply as donors but as long-term partners in research, placing participant engagement at the centre of sustainable biobank governance. 

    Examples 

    • UK Biobank  
    • Lifelines (Netherlands)  
    • Estonian Biobank  
    • FinnGen  

    Disease-oriented biobanks  #

      Disease-oriented biobanks focus on individuals affected by a specific disease or group of diseases, such as cancer, rare diseases, neurological disorders, or cardiovascular diseases. 

      They support research into disease mechanisms, biomarker discovery, precision medicine, and therapeutic development. 

      Examples 

      • Cancer biobanks  
      • Rare disease biobanks  

      Clinical (hospital-based) biobanks  #

        Clinical biobanks are integrated within healthcare institutions and collect samples obtained during routine clinical care or diagnostic procedures. 

        Their close connection with healthcare enables linkage between biological samples and detailed clinical information, supporting translational and precision medicine research. 

        Research biobanks  #

          Research biobanks are established for specific research programmes or scientific projects. They may be temporary or permanent and often focus on answering defined scientific questions while allowing future secondary research under appropriate governance. 

          Digital biobanks  #

            Digital biobanks do not necessarily store biological materials themselves. Instead, they provide catalogues, databases, or federated infrastructures that enable researchers to identify, discover, and access biological samples and associated datasets distributed across multiple institutions. 

            These infrastructures increasingly integrate genomic, imaging, pathology, and clinical data. 

            Federated biobanks  #

              Federated biobanks connect multiple autonomous biobanks through common governance, interoperability standards, and digital infrastructures while allowing each institution to retain control over its own collections. 

              This model facilitates international collaboration and implementation of the FAIR (Findable, Accessible, Interoperable, Reusable) principles. 

              Key ethical, legal and societal issues #

              Informed Consent: 

              Different types of biobanks require different consent approaches. Long-term infrastructures often rely on broad consent supported by robust governance, while project-specific collections may use study-specific consent. Increasingly, dynamic consent models are explored to facilitate ongoing participant engagement.  

              Governance #

              Biobanks act as custodians rather than owners of biological materials. Transparent governance structures, access committees, ethics oversight, and clear policies for secondary use are essential regardless of the biobank type.  

              Data protection #

              Biobanks process sensitive health and genetic information that requires strong safeguards, including pseudonymisation, controlled access, cybersecurity, and compliance with applicable data protection legislation such as the GDPR.  

              Secondary use of samples and data #

              One of the defining features of biobanks is the long-term reuse of samples and associated data. Governance frameworks should ensure that future research remains ethically acceptable, scientifically justified, and consistent with participants’ expectations and legal requirements. 

              International collaboration  #

              Many modern biobanks participate in international research infrastructures. Cross-border sharing requires interoperable standards, Material Transfer Agreements (MTAs), Data Transfer Agreements (DTAs), harmonised governance, and compliance with international data transfer rules. 

              Equity and representation #

              Biobanks should seek to include diverse populations to ensure that biomedical discoveries benefit all communities. Underrepresentation of certain populations can reduce scientific validity and contribute to health inequalities. 

              Public trust, participant engagement and long-term sustainability  #

              Successful biobanks depend on public confidence. Transparency, clear communication, participant involvement, and responsible governance are essential to maintaining trust and encouraging long-term participation. This is particularly important for population and longitudinal biobanks, where the scientific value of the resource depends on sustained participant involvement across many years or even generations. Retaining participants is often challenging. Individuals may withdraw from the study, fail to respond to follow-up requests, or gradually lose interest in continued participation. Certain groups, including young people, socio-economically disadvantaged populations, and ethnic minority communities, are particularly difficult to retain, potentially introducing selection bias and reducing the representativeness of research cohorts. Participant engagement therefore extends beyond recruitment and informed consent. It encompasses continuous communication, transparency about the use of samples and data, opportunities for dialogue, regular updates on research outcomes, and meaningful involvement of participants in the governance of the biobank where appropriate.  

              Emerging digital challenges #

              The increasing integration of artificial intelligence, digital pathology, imaging repositories, and multi-omics data creates new challenges related to algorithmic bias, explainability, interoperability, cybersecurity, etc.  

              Legal and ethical international and EU sources #

              International #

              • Ethical principles for medical research involving human subjects. 
              • Strong influence on national laws and Ethics Committee evaluations. 
              • It tries to achieve a balance between the rights of individuals giving their tissue or data for research and other purposes based on confidentiality and privacy rules while at the same time recognising that health data has become a very powerful tool for increasing knowledge. 
              • Comprehensive soft law framework covering governance, privacy, consent, access, etc. 
              • Detailed operational and ethical guidance for biobank management. 
              • It covers informed consent, use of stored samples, and vulnerable populations. 
              •  ISO 20387:v Biotechnology — Biobanking — General requirements for biobanking.  

              European Union #

              • Key legal framework for data protection, includes special provisions for health data and research (e.g., Art. 9, 89). 
              • Legal protection for privacy, personal data, and academic freedom. 
              • Commission Directive 2006/86/EC of 24 October 2006 implementing Directive 2004/23/EC of the European Parliament and of the Council as regards traceability requirements, notification of serious adverse reactions and events and certain technical requirements for the coding, processing, preservation, storage and distribution of human tissues and cells 
              • Commission Directive 2006/17/EC of 8 February 2006 implementing Directive 2004/23/EC of the European Parliament and of the Council as regards certain technical requirements for the donation, procurement and testing of human tissues and cells 
              • Directive 2004/23/EC of the European Parliament and of the Council of 31 March 2004 on setting standards of quality and safety for the donation, procurement, testing, processing, preservation, storage and distribution of human tissues and cells 
              • Directive 98/44/EC of the European Parliament and of the Council of 6 July 1998 on the legal protection of biotechnological inventions  

              BBMRI-ERIC resources #

              External resources #

              Relevant literature #

              • Vaught J, Rogers J, Carolin T, Compton C. (2011). Biobankonomics: Developing a Sustainable Business Model Approach for the Formation of a Human Tissue Biobank. Journal of the National Cancer Institute Monographs, 42, 24–31. 
              • Yuille M, van Ommen GJ, Bréchot C, Cambon-Thomsen A, Dagher G, Landegren U, Litton JE, Pasterk M, Peltonen L, Taussig M, Wichmann HE, Zatloukal K. Biobanking for Europe. Brief Bioinform. 2008 Jan;9(1):14-24. doi: 10.1093/bib/bbm050. Epub 2007 Oct 23. PMID: 17959611. 
              • Vaught JB, Henderson MK, Compton CC. Biospecimens and biorepositories: from afterthought to science. Cancer Epidemiol Biomarkers Prev. 2012 Feb;21(2):253-5. doi: 10.1158/1055-9965.EPI-11-1179. PMID: 22313938; PMCID: PMC3277207. 
              • Brancato V, Esposito G, Coppola L, Cavaliere C, Mirabelli P, Scapicchio C, Borgheresi R, Neri E, Salvatore M, Aiello M. Standardizing digital biobanks: integrating imaging, genomic, and clinical data for precision medicine. J Transl Med. 2024 Feb 5;22(1):136. doi: 10.1186/s12967-024-04891-8. PMID: 38317237; PMCID: PMC10845786. 
              • Bukreeva AS, Malsagova KA, Petrovskiy DV, Butkova TV, Nakhod VI, Rudnev VR, Izotov AA, Kaysheva AL. Biobank Digitalization: From Data Acquisition to Efficient Use. Biology (Basel). 2024 Nov 22;13(12):957. doi: 10.3390/biology13120957. PMID: 39765624; PMCID: PMC11726863. 

              Biobanking Development, ELSI
              Updated on 23 July, 2026