Biobanks are collections of donations of biological material (DNA, cells, tissue etc.) and related data which are very valuable for research into human diseases. A variety of biobanks exist for example within hospitals, research institutes, pharmaceutical companies and patient organisations. The role of patients in biobanking is changing from being seen simply as donors, to actual collaborators in the design, development and the running of biobanks. In this article, we provide a number of examples of patients acting as partners at the heart of biobanking, where their voice and perspective is being seen and used as a valuable resource for the biobank. Our aim is that these examples can be used by those who work with patients in biobank-based research, to design future strategies for patient and public involvement in all biobanks. Biobanks collect, process, store and distribute biological material and related data to research organisations. These “biospecimens” and data are used by scientists to learn more about human diseases, their causes and their effects and to develop better prevention measures, better diagnostic tests and better therapies. 

Different types of biobanks exist and are described in greater detail in the “Definitions” section below. Unless otherwise stated, the term “biobank” in this article refers to disease-oriented, general biobanks comprising of human tissue, cell or DNA biosamples and associated clinical data. Biobanks do not operate in isolation. They exist within a diverse “ecosystem” of stakeholders which includes the public, patients, healthcare workers, scientists, government, funders, healthcare providers, ethicists, regulators and others. The sheer variety of stakeholders involved in maintaining biobanks reflects the diversity of biobanks themselves.Biobanking operators such as hospitals, research institutes, pharmaceutical companies and patient organisations interpret their own biobanking activities differently, very often according to the background of the founding organisation and the particular context in which the biobank is embedded (e.g. geographical location, ability to network nationally or internationally etc.). The role of patients and the public in biobanking activities has been viewed traditionally as biobank participants rather than as collaborators in the design, development and ongoing operation and governance of biobanks. However, there is growing acceptance and appreciation of the value that patients, patient advocacy organisations and the public can bring as stakeholders in biobanking and more generally in research. This article demonstrates the wealth of experience that now exists within patient communities which makes them valuable partners and sources of input in biobanking research. We demonstrate that patients are much more than donors—they are collaborators at the heart of biobanking with an important voice and a unique perspective, which can be an extremely valuable resource for all biobanks to utilise. The case studies herein provide examples of good practice of patient involvement in biobanking as well as outcomes from these practices, and lessons learned. Our aim is to provide useful insights from these efforts and potential future strategies for the multiple stakeholders that work with patients and the public involved in biobank-based research.

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Journal of Clinical Research and Bioethics
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