Available online 1 April 2024, 101551

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Biobanking provides benefit for future generations by facilitating medical research and subsequent translation and application of research findings. Long-term storage and research involving biological material and associated data necessitate the proper implementation of ethical and legal standards. A key principle includes recognizing informed consent as a crucial element for legitimizing the collection of biological material and data. Furthermore, any collected material and data must be employed exclusively for the research framework that aligns with the explicit consent provided by the participants. Last but not least, data privacy and security are essential in biobanking. This review elucidates chances and limitations of biobanking in the field of allogeneic hematopoietic cell transplantation. We discuss the practical implementation of the requirements, illustrated by the Collaborative Biobank, a collaborative research platform for research in blood cancer.

Section snippetsBiobanking as research resource

Human biobanks are research resources supporting the conduct of medical research by collecting, processing and storing large amounts of biological materials. Biobanking activities include also storing of associated data, including data from diagnosis, therapy and health outcomes [1]. Biological material refers to a sample obtained from an individual human being which can provide biological information, including genetic information, about that individual [2]. Depending on the purpose, the

Collaborative biobank

In the context of hematopoietic cell transplantation volunteer donors donate hematopoietic stem cells for the treatment of a specific patient. In that context the question emerges, if additional benefits can be generated out of the altruistic donation, leading to helpful insights into hematological diseases. For that purpose, in 2016 DKMS established the Collaborative Biobank (CoBi) together with transplant and collection centers as a cooperative science platform to provide long-term resources

Obligations for research on identifiable human material and data

There are ethical, legal and social standards that apply for research with biological material and associated data which also have to be considered for biobanking activities (Table 1). Both biological material (through its genetic information) and associated data encompass identifiable content. The Declaration of Helsinki in its latest revision from 2013 states ethical principles for medical research on identifiable human material and data, especially the obligation to obtain informed consent [6

CoBi sample properties and repository

Collaborative Biobank is a disease-oriented biobank focussing on blood cancer and hematopoietic stem cell transplantation. Sample collection mainly includes genomic DNA and minor amounts of viable cell and plasma material, from individuals donating hematopoietic stem cells and patients suffering from haematological diseases. Corresponding sample data as well as patients' medical data related to transplantation and outcome are stored in separate databases operated by the Collaborative Biobank

Access

Any research group can request Collaborative Biobank resources for a specific research project, provided certain conditions are met. Applications must comply with the research framework, as mentioned earlier, and will be evaluated based on mandatory documents provided by applicants. These include the research project protocol and a written statement from the competent EC as well as an access application form.

Using the Collaborative Biobank website (www.cobi-biobank.de) or via E-Mail to [email protected]

Collaborative biobank for research in blood cancer

Access to high quality sample material, together with high numbers of projects involving biobanking and high project completion rates are instrumental to success [3]. Collaborative Biobank resources contribute to 14 research projects to date. More than one fifth – about 12,000 – of Collaborative Biobank sample material and corresponding data have been used for research so far. To further expand the utility of Collaborative Biobank samples, especially the donor material lacking a matched

Summary

There are ethical, legal and social standards that apply for research with biological material and associated data which have to be considered for biobanking activities. Common to all those standards is, that they aim to ensure that biobanks respect individuals' rights and privacy, obtain informed consent, and use the collected material and data for research purposes consistent with the participants' consent. Practical implementation of the requirements for the establishment and operation of a

CRediT authorship contribution statement

Claudia Spielau: Writing – original draft. Carolin Bunzel: Writing – review & editing. Stefan Abert: Writing – review & editing. Henning Baldauf: Writing – review & editing. Alexander H. Schmidt: Writing – review & editing, Supervision. Johannes Schetelig: Writing – review & editing, Supervision.

Declaration of competing interest

All authors declare that they have no conflict of interest.Practice points•

Informed consent is obligatory for biobanking and must be obtained in accordance to the Declaration of Helsinki.

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An independent ethics committee must be consulted for the establishment of biobanks used for research.

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The usage of biological material for research is dependent on the donor consent.

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Data privacy and security are essential for respecting participants.

Research agenda•

Collaborative Biobank is a project focused on enhancing our understanding of

Acknowledgements

I would like to express my sincere gratitude to all co-authors for their invaluable contributions and support throughout manuscript writing. Their guidance and expertise have been instrumental in shaping the outcome of this work.

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(2016)

International ethical guidelines for health-related research involving humans

(2016)

M.J. BledsoeEthical legal and social issues of biobanking: past, present, and future

Biopreserv Biobanking

(2017)

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© 2024 Published by Elsevier Ltd.