Biobanking from the patient perspective.
Biobanking from the patient perspective.
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DOI：
10.1186/s40900-015-0001-z
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发表时间：
2015-01-01
影响因子：
--
通讯作者：
Matharoo-Ball, Balwir
中科院分区：
文献类型：
--
作者：
Mitchell, Derick;Geissler, Jan;Matharoo-Ball, Balwir
生物银行是捐赠的生物材料（DNA，细胞，组织等）的集合。以及相关数据，对人类疾病的研究非常有价值。例如，在医院、研究机构、制药公司和患者组织中存在各种生物库。患者在生物库中的角色正在从简单的捐赠者转变为生物库设计、开发和运行的实际合作者。在本文中，我们提供了一些患者作为生物库核心合作伙伴的例子，他们的声音和观点被视为生物库的宝贵资源。我们的目标是，这些例子可以被那些谁与患者在生物库为基础的研究工作，设计未来的战略，为患者和公众参与所有biobanks.AbSTRACT：生物库和生物库的研究发挥越来越重要的作用，在医疗保健研究和提供卫生系统变得更加以患者为中心，医学变得更加个性化。患者、患者权益组织和公众作为利益相关者在生物库和更广泛的研究中所能带来的价值也越来越被接受和欣赏。因此，患者和公众代表积极、及早和持续地参与生物库的重要性将变得越来越重要。组织和促进患者和公众参与生物库需要所有利益相关者花费大量时间和精力。因此，对于任何考虑让患者和公众参与其生物库活动的生物库运营商来说，考虑最佳实践、当前指南、伦理问题和参与评估将非常重要。在本文中，我们证明患者不仅仅是生物库的捐赠者--他们是生物库核心的合作者，在确定观点方面具有重要的发言权，这对于所有生物库来说都是一个极其宝贵的资源。本文中的案例研究提供了患者参与生物库的良好实践以及这些实践的结果和经验教训的例子。我们的目标是从这些努力中提供有用的见解，并为参与生物库研究的患者和公众提供潜在的未来战略。
PLAIN ENGLISH SUMMARY: 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.ABSTRACT: Biobanks and biobanking research plays an increasingly important role in healthcare research and delivery as health systems become more patient-centred and medicine becomes more personalised. There is also 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. Therefore, the importance of active, early and sustained engagement and involvement of patient and public representatives in biobanks will become increasingly relevant. Organising and facilitating patient and public involvement in biobanking takes considerable time and effort for all stakeholders involved. Therefore, for any biobank operator considering involving patients and the public in their biobanking activities, consideration of best practices, current guidance, ethical issues and evaluation of involvement will be important. In this article, we demonstrate that patients are much more than donors to biobanks-they are collaborators at the heart of biobanking with an important voice to identify 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.