Overview #

Biobanking research refers to the collection, processing, storage, management, and sharing of human biological materials (such as blood, tissue, cells, DNA, RNA, and other biospecimens) together with associated health, clinical, demographic, lifestyle, environmental, and increasingly digital data for present and future scientific research. Modern biobanks have become fundamental research infrastructures supporting biomedical research, precision medicine, public health, genomics, artificial intelligence, and the development of innovative diagnostics and therapeutics. 

Unlike traditional research projects designed to answer a single scientific question, biobanks are long-term infrastructures that enable multiple future studies, many of which cannot be fully specified at the time biological samples and data are collected. Their scientific value lies not only in the quality of biological materials but also in the availability of well-curated, interoperable, and high-quality associated data, allowing researchers to investigate disease mechanisms, identify biomarkers, validate diagnostic tools, and develop personalised approaches to prevention and treatment. 

Contemporary biobanking increasingly operates within international research networks, facilitating cross-border collaboration and large-scale data sharing. The integration of genomic technologies, digital health records, imaging, multi-omics, and artificial intelligence has transformed biobanks into complex digital research ecosystems that generate new opportunities for biomedical discovery while simultaneously raising important ethical, legal, and societal questions. Consequently, good biobanking practice extends beyond technical quality standards to encompass responsible governance, participant engagement, transparency, and public trust. 

Importantly, the success of biobank-based research ultimately depends on the willingness of individuals to donate biological materials and associated data. Participation in biobanking is not determined solely by legal and ethical safeguards but is also shaped by social, cultural, and psychological factors, including trust in researchers and healthcare professionals, perceptions of scientific research, individual values, and previous experiences with healthcare systems. Recognising these factors is essential for developing effective communication strategies, promoting meaningful participant engagement, improving recruitment and long-term participation, and strengthening public confidence in biobanks. 

Key ethical, legal and societal implications #

Respect for participants and informed consent #

Participation in biobanking should be voluntary and based on appropriate informed consent or another lawful basis where permitted by applicable legislation. Because future research uses cannot always be fully anticipated, biobanks often rely on broad or tiered consent models accompanied by robust governance mechanisms, transparency, and ongoing communication with participants. Increasing attention is also being given to dynamic consent and other models that promote continued participant engagement. The choices depend on national legislations and different approaches in biobanks themselves.  

Privacy, confidentiality and data protection #

Biobanks routinely process sensitive personal data, including genetic, genomic, and health-related information. Protecting participants’ privacy requires robust technical and organisational safeguards, including pseudonymisation, controlled access, cybersecurity measures, and clear governance procedures. Responsible data sharing must balance scientific openness with the protection of individual rights and confidentiality. 

Secondary use of samples and data #

One defining characteristic of biobanking is the long-term storage and reuse of biological materials and associated data for future research. Secondary use raises important questions regarding participant expectations, governance, transparency, compatibility of new research purposes with original consent, and responsible stewardship of valuable research resources. 

Governance, transparency and trust #

Public trust is fundamental to the sustainability of biobanks. Effective governance requires transparent policies regarding access to samples and data, ethical review, benefit sharing, oversight mechanisms, management of conflicts of interest, and accountability. Independent ethics committees, access committees, and scientific advisory boards play a central role in ensuring responsible management. 

Building and maintaining trust, however, extends beyond institutional governance. Biobanks operate within specific social and cultural contexts, and participation is influenced by individuals’ knowledge, attitudes, values, and confidence in research institutions. Studies have shown that willingness to donate biological samples is associated with psychosocial factors such as trust in scientists and healthcare professionals, attitudes towards biomedical research, personality traits, and personal values. Understanding these determinants enables biobanks to develop participant-centred communication strategies, tailor public engagement initiatives, and foster long-term relationships with participants and communities. By recognising the societal dimensions of participation, biobanks can improve recruitment, strengthen public trust, and support the sustainability of biomedical research. 

Equity, diversity and inclusion #

Biobanks should strive to ensure equitable participation of diverse populations in order to improve the generalisability and fairness of biomedical research. Underrepresentation of certain populations may lead to scientific bias, unequal health benefits, and reduced applicability of research findings. Inclusive recruitment strategies and attention to vulnerable populations are therefore essential components of responsible biobanking. 

Return of research results #

Research conducted using biobank resources may generate individual findings or incidental findings with potential clinical relevance. Whether, when, and how such findings should be returned to participants remains one of the most debated issues in biobank governance. Policies should consider scientific validity, clinical utility, participant preferences, and the availability of appropriate counselling and clinical support. 

International collaboration and data sharing #

Modern biomedical research increasingly depends on international collaboration and cross-border sharing of biological materials and associated data. Such collaboration requires harmonised standards, interoperable infrastructures, Material Transfer Agreements (MTAs), Data Transfer Agreements (DTAs), and compliance with data protection legislation governing international transfers. 

Emerging technologies #

The integration of artificial intelligence, digital biobanking, multi-omics technologies, federated data analysis, and the European Health Data Space is transforming biobank-based research. While these developments create unprecedented opportunities for precision medicine, they also raise novel questions concerning algorithmic fairness, explainability, data governance, cybersecurity, and responsible innovation.

Legal and ethical international and EU sources about biobanking research #

Please not that the following sources are divided into Soft Law and Hard Law. 

• Soft law is the term applied to EU measures, such as guidelines, recommendations, declarations and opinions, which are not binding on those to whom they are addressed. At the Eu level, Recommendations and opinions shall have no binding force. 
• Hard law refers to legally binding acts. these are usually conventions at the international level and regulations/directives/decisions at the EU level.  

More specifically, at the EU level, a regulation shall have general application. It shall be binding in its entirety and directly applicable in all Member States. 

A directive shall be binding, as to the result to be achieved, upon each Member State to which it is addressed, but shall leave to the national authorities the choice of form and methods. 

A decision shall be binding in its entirety. A decision which specifies those to whom it is addressed shall be binding only on them. 

International level #

Not properly Hard Law but considered as foundational  

• UNESCO Universal Declaration on Bioethics and Human Rights (2005): it emphasises informed consent, benefit sharing, and protection of vulnerable individuals. 
• WMA Declaration of Helsinki (1964):  
• Ethical principles for medical research involving human subjects. 
• Strong influence on national laws and Ethics Committee evaluations. 
• WMA Declaration of Taipei on Ethical Considerations regarding Health Databases and Biobanks (2016) 
• 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. 

Soft Law 

• OECD Guidelines for Human Biobanks and Genetic Research Databases (HBGRDs) (2009) 
• Comprehensive soft law framework covering governance, privacy, consent, access, etc. 
• ISBER Best Practices: Recommendations for Repositories  
• Detailed operational and ethical guidance for biobank management. 
• CIOMS International Ethical Guidelines for Health-related Research Involving Humans (2016) 
• It covers informed consent, use of stored samples, and vulnerable populations. 

Hard Law  

• The Oviedo Convention (1997), Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine 
  • Art. 5: Informed consent  
  • Art. 16–18: Biomedical research, including protection of vulnerable persons 

• Protocols to Oviedo Convention:  
• Additional Protocol on Biomedical Research (2005)   
• Additional Protocol on Genetic Testing for Health Purposes (2008) 

European level #

Hard Law 

• EU General Data Protection Regulation (GDPR) – Regulation (EU) 2016/679 
• Key legal framework for data protection, includes special provisions for health data and research (e.g., Art. 9, 89). 
• Charter of Fundamental Rights of the EU (esp. Articles 7, 8, and 13) 
• 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  

 Soft Law   

• European Group on Ethics in Science and New Technologies (EGE) Opinion No. 11 (1998) on Ethical aspects of human tissue  
• European Data Protection Board (EDPB) Document on response to the request from the European Commission for clarifications on the consistent application of the GDPR, focusing on health research (2021)  

Legal and ethical sources related to topics connected with biobanking research #

Research involving minors   #

• Regulation on medicinal products for paediatric use: Regulation (EC) No 1901/2006 of the European Parliament and of the Council of 12 December 2006 on medicinal products for paediatric use and amending Regulation (EEC) No 1768/92, Directive 2001/20/EC, Directive 2001/83/EC and Regulation (EC) No 726/2004 (Text with EEA relevance) 
• Convention on the Rights of the Child: the United Nations Convention on the Rights of the Child (commonly abbreviated as the CRC or UNCRC) is an international human rights treaty which sets out the civil, political, economic, social, health and cultural rights of children.  
• Declaration of Helsinki (WMA): Special protections for minors, it requires consent from a legally authorised representative and assent from the minor when possible 
• CIOMS International Ethical Guidelines for Health-related Research Involving Humans (2016): Guideline 17 emphasises necessity of parental/guardian consent, minor’s assent, and ethical committee oversight. Research not directly benefiting the child must involve minimal risk. 
• EU Charter of Fundamental Rights: Art. 24: Rights of the child (protection, care, expression of views). Art. 35: everyone has the right to access preventive health care and the right to benefit from medical treatment according to national law and practice 
• Recommendations of the expert group on clinical trials for the implementation of Regulation (EU) No 536/2014 on clinical trials on medicinal products for human use. 

Human rights    #

• UNESCO Universal Declaration on Bioethics and Human Rights (2005): it emphasises informed consent, benefit sharing, and protection of vulnerable individuals. 
• Universal Declaration of Human Rights (UDHR) – 1948  
• European Convention on Human Rights (ECHR) – 1950  
• Charter of Fundamental Rights of the European Union: it enshrines certain political, social, and economic rights for European Union (EU) citizens and residents into EU law.  

Data sharing and data protection  #

• International Covenant on Civil and Political Rights (ICCPR) – 1966: Art. 17: Right to privacy: interpreted to include data protection. 
• Council of Europe – Convention 108 (Modernised Convention for the Protection of Individuals with Regard to Processing of Personal Data)  
• OECD Recommendation on Health Data Governance in the Digital Space (2022) 
• OECD Guidelines on the Protection of Privacy and Transborder Flows of Personal Data (2013 Update) 
• OECD Principles and Guidelines for Access to Research Data from Public Funding: A set of guidelines based on commonly agreed principles to facilitate cost-effective access to digital research data from public funding. 
• GDPR: Regulation (EU) 2016/679 of the European Parliament and of the Council of 27 April 2016 on the protection of natural persons with regard to the processing of personal data and on the free movement of such data, and repealing Directive 95/46/EC (General Data Protection Regulation) 
• Directive on privacy and electronic communications: Directive 2002/58/EC of the European Parliament and of the Council of 12 July 2002 concerning the processing of personal data and the protection of privacy in the electronic communications sector. 
• EU Data Governance Act (DGA) – Regulation (EU) 2022/868 
• EU Data Act (Regulation (EU) 2023/2854)  
• International Sharing of Personal Health Data for Research (2021): The ALLEA, EASAC and FEAM joint initiative on resolving the barriers of transferring public sector data outside the EU/EEA  
• International code of conduct for genomic and health-related data sharing (Global Alliance for Genomics and Health): this Code establishes a set of foundational principles and guidelines for responsible research conduct and oversight of research data systems, guided by the enforceable human rights of privacy, non-discrimination, and procedural fairness. 
• Data Protection Code of Conduct Cookbook: the Data protection Code of Conducts enables safe attribute release between Identity and Service Providers within EU  
• WHO Guidance for human genome data collection, access, use and sharing: The WHO’s Guidelines provides principles to guide stakeholders in responsibly collecting, using, and sharing genomic data.  

Research on humans  #

• The Oviedo Convention (1997), Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine  
• Declaration of Helsinki (WMA): the Declaration of Helsinki lays down ethical principles for medical research involving human subjects, including the importance of protecting the dignity, autonomy, privacy and confidentiality of research subjects, and obtaining informed consent for using identifiable human biological material and data. Previously, the Declaration of Helsinki addressed WMA members and constituents. The new version of the Declaration says it is the moral obligation of physicians to ensure that their patients and the participants in research are respected and treated with dignity.  
• Declaration of Taipei on ethical considerations regarding health data bases and biobanks (WMA): This Declaration is intended to cover the collection, storage and use of identifiable data and biological material beyond the individual care of patients. In concordance with the Declaration of Helsinki, it provides additional ethical principles for their use in Health Databases and Biobanks.  
• CIOMS International Ethical Guidelines for Health-related Research Involving Humans (2016)  
• WHO: Handbook for Good Clinical Research Practice: This handbook is intended to assist national regulatory authorities, sponsors, investigators and ethics committees in implementing GCP for industry-sponsored, government-sponsored, institution-sponsored, or investigator-initiated clinical research. 

Research integrity  #

• The European Code of Conduct for Research Integrity: Regulation (EC) No 1901/2006 of the European Parliament and of the Council of 12 December 2006 on medicinal products for paediatric use and amending Regulation (EEC) No 1768/92, Directive 2001/20/EC, Directive 2001/83/EC and Regulation (EC) No 726/2004 (Text with EEA relevance) 
• Guideline for Promoting Research Integrity in Research Performing Organisations: this guideline points to nine topics that must be addressed in a Research Integrity Promotion Plan.  
• Code of Practice on Secondary Use of Medical Data in Scientific Research Projects: this Code of Practice aims to provide a set of harmonised rules applicable to secondary use of medical data. It is intended to be useful to research projects involving multiple legal entities established in one or more EU member countries. 
• WCRIF Guidance on Research Integrity: the mission of the WCRIF is to promote research integrity through support for the ongoing organisation and development of the World Conferences and all related activities. 
• Singapore Statement on Research Integrity (2010) 
• Core principles: honesty, accountability, professionalism, stewardship 
• Focus areas: data management, authorship, peer review, misconduct 
• OECD Principles of Good Laboratory Practice and Compliance Monitoring (2007) 
• Promote transparency, reproducibility, and accountability 
• Emphasise the role of institutions and funding bodies in integrity 
• UNESCO Recommendation on Open Science (2021) 
• Links open access, FAIR data, and transparency to research integrity 
• Emphasises responsible conduct, inclusive research, and reproducibility 

Genetics research  #

• The Oviedo Convention (1997), Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine: 
• Art. 11: Prohibition of genetic discrimination 
• Art. 12: Predictive genetic tests only for health purposes or benefit to the individual 
• Additional Protocol on Genetic Testing for Health Purposes (2008): it provides detailed standards on genetic testing, consent, counselling, and minors 
• Additional Protocol to the Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine (the Oviedo Convention), on the Prohibition of Cloning Human Beings  
• Universal Declaration on the Human Genome and Human Rights (UNESCO, 1997)  
• Guidelines for the implementation of the Universal Declaration on the Human Genome and Human Rights (UNESCO, 1999): these Guidelines seek to identify not only the tasks devolving on the different actors in the implementation of the Declaration but also modalities of action for their achievement.  
• International Declaration on Human Genetic Data (UNESCO, 2003): one of the aims of this Declaration is to ensure the respect of human dignity and protection of human rights and fundamental freedoms in the collection, processing, use and storage of human genetic data, human proteomic data and of the biological samples from which they are derived, referred to hereinafter as “biological samples”, in keeping with the requirements of equality, justice and solidarity, while giving due consideration to freedom of thought and expression, including freedom of research.  
• OECD Guidelines on Human Biobanks and Genetic Research Databases: these guidelines aim to provide guidance for the establishment, governance, management, operation, access, use and discontinuation of human biobanks and genetic research databases, which are structured resources that can be used for the purpose of genetic research.  

Covid-19  #

• Statement on the processing of personal data in the context of the COVID-19 outbreak (European Data Protection Board, 2020): several considerations should be considered to guarantee the lawful processing of personal data and in all cases, it should be recalled that any measure taken in this context must respect the general principles of law and must not be irreversible  
• Statement on European Solidarity and the Protection of Fundamental Rights in the COVID-19 Pandemic By the European Group on Ethics in Science and New Technologies  
• Position on the Responsibility of Research Ethics Committees during the COVID-19 Pandemic: Rules for Research Ethics Committees by the European Network of Research Ethics Committees –EUREC  
• European Commission, Guidance on the management of clinical trials during the Covid-19 pandemic, 2022: it should be noted that the simplification measures proposed in this document will only last during the current public health crisis until the revocation of this Guidance, when there is a consensus that the period of the COVID-19 outbreak in the EU/EEA, has passed.  

Reimbursement and compensation to research participants   #

• Council of Europe, Additional Protocol to Convention on human rights and biomedicine concerning biomedical research. CETS 195, 2005  
• Council of Europe, Convention against Trafficking in Human Organs, CETS No. 216, 2015  
• Council of Europe, Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine. 1996  
• Council of Europe, Explanatory report to Additional Protocol to Convention on human rights and biomedicine concerning biomedical research, 2005 
• Council of Europe’s Committee on Bioethics (DH-BIO), Guide for the implementation of the principle of prohibition of financial gain with respect to the human body and its parts from living or deceased donors, 2018  
• Council for International Organizations of Medical Sciences (CIOMS) in collaboration with the World Health Organization (WHO), International Ethical Guidelines for Health-related Research Involving Humans, 2016 
• WHO Guiding Principles on Human Cell, Tissue and Organ Transplantation  
• Recommendation No. R (95) 14 of the Committee of Ministers to member states on the protection of the health of donors and recipients in the area of blood transfusion  

BBMRI-ERIC resources  #

Services  #

• Find Samples and Data 
• Helpdesk 
• Standardisation Guides 
• Knowledge Base 
• Audit Programme 

Policies  #

• BBMRI-ERIC Policy for Access to and Sharing of Biological Samples and Data: this access policy presents three areas of guidance: i) ethical principles; ii) governance procedures; and iii) practical procedures for access. 

Publications  #

BBMRI-ERIC ELSI members are the authors of, or have contributed to the following publications: 

• Goisauf, Melanie; Durnová, Anna; Grewal, Jasjote; Mayrhofer, Michaela “HOW-TO GUIDE: GOVERNANCE IN BIOBANKING”. Zenodo, 2019 (updated 08/2024). https://zenodo.org/records/13235459, Open access 
• Goisauf M, Martin G, Bentzen HB, Budin-Ljøsne I, Ursin L, Durnová A, Leitsalu L, Smith K, Casati S, Lavitrano M, Mascalzoni D, Boeckhout M, Mayrhofer MT. Correction: Data in question: A survey of European biobank professionals on ethical, legal and societal challenges of biobank research. PLoS One. 2019 Dec 2;14(12):e0226149. doi: 10.1371/journal.pone.0226149. Erratum for: PLoS One. 2019 Sep 18;14(9):e0221496. doi: 10.1371/journal.pone.0221496. PMID: 31790510; PMCID: PMC6886846. 
• Mayrhofer, M.T., Slokenberga, S., & Mežinska, S. (Eds.). (2025). Artificial Intelligence in Biobanking: Ethical, Legal and Societal Challenges (1st ed.). Routledge. https://doi.org/10.4324/9781032634487 
• Loizidou EM, Kyratzi M, Tsiarli MA, Kakouri AC, Charalambidou G, Antoniou S, Pieri S, Veloudi P, Mayrhofer MT, Wutte A, Kozera L, Habermann J, Muller H, Zatloukal K, Sargsyan K, Michaelides A, Papaioannou M, Schizas C, Malatras A, Papagregoriou G, Deltas C.. biobank.cy: the Biobank of Cyprus past, present and future. Sci Rep. 2024. https://doi.org/10.1038/s41598-024-78644-4 
• Akyüz K, Goisauf M, Martin GM, Mayrhofer MT, Antoniou S, Charalambidou G, Deltas C, Malatras A, Papagregoriou G, Stefanou C, Voutounou M.. Risk mapping for better governance in biobanking: the case of biobank.cy. Front Genet. 2024. https://doi.org/10.3389/fgene.2024.1397156 
• Tzortzatou-Nanopoulou, O., Akyüz, K., Goisauf, M., Kozera, Ł., Mežinska, S., Th. Mayrhofer, M., Slokenberga, S., Reichel, J., Croxton, T., Ziaka, A., & Makri, M. (2023). Ethical, legal, and social implications in research biobanking: A checklist for navigating complexity. Developing World Bioethics. https://doi.org/10.1111/dewb.12411Digital Object Identifier (DOI) 
• Akyüz K, Chassang G, Goisauf M, Kozera Ł, Mezinska S, Tzortzatou O, Mayrhofer MT.. Biobanking and risk assessment: a comprehensive typology of risks for an adaptive risk governance. Life Sci Soc Policy. 2021. https://doi.org/10.1186/s40504-021-00117-7 
• Salman A, Baber R, Hannigan L, Habermann JK, Henderson MK, Mayrhofer MT, Afifi N.. Quality Matters: A Global Discussion in Qatar. Biopreserv Biobank. 2019. https://doi.org/10.1089/bio.2019.0073 
• Salman A, Baber R, Hannigan L, Habermann JK, Henderson MK, Mayrhofer MT, Afifi N.. Qatar Biobank Milestones in Building a Successful Biobank. Biopreserv Biobank. 2019. https://doi.org/10.1089/bio.2019.0083 
• Beekman JM, Wang CM, Casati S, Tuggle KL, Gulmans VAM, Amaral M, De Boeck K.. Biobanking: towards increased access of biomaterials in cystic fibrosis. Report on the pre-conference meeting to the 13th ECFS Basic Science Conference, Pisa, 30 March-2 April, 2016. J Cyst Fibros. 2017. https://doi.org/10.1016/j.jcf.2017.04.009 
• Napolitani F, Calzolari A, Cambon-Thomsen A, Mabile L, Rossi AM, De Castro P, Bravo E.. Biobankers: Treat the Poison of Invisibility with CoBRA, a Systematic Way of Citing Bioresources in Journal Articles. Biopreserv Biobank. 2016. https://doi.org/10.1089/bio.2015.0105 
• Mayrhofer MT, Holub P, Wutte A, Litton JE.. BBMRI-ERIC: the novel gateway to biobanks. From humans to humans. Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz. 2016. https://doi.org/10.1007/s00103-015-2301-8 
• Colombo C, Mayrhofer MT, Kubiak C, Battaglia S, Matei M, Lavitrano M, Casati S, Chico V, Schluender I, Carapina T, Mosconi P.. The CORBEL matrix on informed consent in clinical studies: a multidisciplinary approach of Research Infrastructures Building Enduring Life-science Services. BMC Med Ethics. 2021. https://doi.org/10.1186/s12910-021-00639-x 
• Simell BA, Törnwall OM, Hämäläinen I, Wichmann HE, Anton G, Brennan P, Bouvard L, Slimani N, Moskal A, Gunter M, Zatloukal K, Minion JT, Soini S, Mayrhofer MT, Murtagh MJ, van Ommen GJ, Johansson M, Perola M; BBMRI-LPC Consortium (FP7 GA no. 313010). Transnational access to large prospective cohorts in Europe: Current trends and unmet needs. N Biotech. 2019. https://doi.org/10.1016/j.nbt.2018.10.001 
• Mayrhofer MT, Akyüz K, Goisauf, M, Wilson B, Avraam D. (2023). Deliverable D7.1: Governance context appraisal. Zenodo. https://doi.org/10.5281/zenodo.8120723 
• Schlünder I, Mayrhofer MT, Ene E (2023). Elements of Secure Processing Environments (Workshop Report) V1.0. Zenodo. https://doi.org/10.5281/zenodo.8341642 
• BBMRI-ERIC contribution to the public consultation on the WMA declaration on ethical considerations regarding health data- bases and biobanks, 2015 
• Comments to the public consultation on the Council of Europe Recommendation (2006)4 on research on biological materials of human origin, 2014/08/14 

Webinars #

• Psychosocial characteristics of potential participants in biobanking 
• Futureproofing Biobanks’ Governance 
• Introduction to the Belgian Biobank Legislation 

Relevant literature #

• Watson PH, Nussbeck SY, Carter C, O’Donoghue S, Cheah S, Matzke LA, Barnes RO, Bartlett J, Carpenter J, Grizzle WE, Johnston RN, Mes-Masson AM, Murphy L, Sexton K, Shepherd L, Simeon-Dubach D, Zeps N, Schacter B. A framework for biobank sustainability. Biopreserv Biobank. 2014 Feb;12(1):60-8. doi: 10.1089/bio.2013.0064. PMID: 24620771; PMCID: PMC4150367. 
• 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. 
• Kinkorová J. Biobanks in the era of personalized medicine: objectives, challenges, and innovation: Overview. EPMA J. 2016 Feb 22;7(1):4. doi: 10.1186/s13167-016-0053-7. PMID: 26904153; PMCID: PMC4762166. 
• 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.