Rush Amanda, Byrne Jennifer A, Watson Peter H
Sydney School of Public Health, Faculty of Medicine and Health, The University of Sydney, Camperdown, New South Wales, Australia.
Menzies Centre for Health Policy and Economics, The University of Sydney, Camperdown, New South Wales, Australia.
Biopreserv Biobank. 2024 Dec;22(6):550-556. doi: 10.1089/bio.2023.0110. Epub 2024 Feb 12.
The importance of stimulating greater sharing of data for use and reuse in health research is widely recognized. To this end, the findable, accessible, interoperable, and reusable (FAIR) principles for data have been developed and widely accepted in the research community. Research biospecimens are a resource that leads to much of this health research data but are also a form of data. Therefore, the FAIR principles should apply to biospecimens. Nevertheless, there is a widespread problem of not sharing biospecimen resources that is clearly visible within the research arena. The impacts of this are likely to include diversion of precious research funds into compiling duplicate biospecimen cohorts, detraction from research productivity as researchers compete for and create duplicate resources, and deterrence of attempts to assess research reproducibility. This article explores some of the barriers that may limit availability of FAIR biospecimens. These barriers relate to the type of biospecimen collections and the characteristics of the custodians that influence their intention and interest in sharing. Barriers also relate to the ethical, legal, and social issues concerning collections, the research context of the collections, and cost and expertise involved in repurposing collections to enable sharing. Several solutions to increase sharing are identified. Some have recently been implemented, including enhancing biospecimen locators with tools to guide researchers and facilitating transfer of research collections to centralized biobank infrastructures at the conclusion of projects. New proposed solutions include improving search capabilities within publication databases, and introduction of evidence-based justifications for all new collections into peer-reviewed grant competition processes. It is recognized that there are both scientific factors and practical reasons that can impose limits to sharing biospecimens. However, funding availability, productivity, and progress in health research all stand to benefit from improved sharing of research biospecimen collections.
促进在健康研究中更广泛地共享数据以供使用和再利用的重要性已得到广泛认可。为此，已制定了数据的可查找、可访问、可互操作和可再利用（FAIR）原则，并在研究界得到广泛接受。研究生物样本是产生许多此类健康研究数据的资源，但也是一种数据形式。因此，FAIR原则应适用于生物样本。然而，在研究领域中，生物样本资源不共享的问题普遍存在且显而易见。其影响可能包括将宝贵的研究资金转移用于编制重复的生物样本队列，由于研究人员争夺并创建重复资源而降低研究生产力，以及阻碍评估研究可重复性的尝试。本文探讨了一些可能限制FAIR生物样本可用性的障碍。这些障碍与生物样本库的类型以及保管人的特征有关，这些特征会影响他们共享的意愿和兴趣。障碍还涉及与样本库相关的伦理、法律和社会问题、样本库的研究背景以及为实现共享而对样本库进行重新利用所涉及的成本和专业知识。确定了几种增加共享的解决方案。其中一些最近已经实施，包括使用工具增强生物样本定位器以指导研究人员，并在项目结束时促进将研究样本库转移到集中式生物样本库基础设施。新提出的解决方案包括提高出版物数据库中的搜索能力，以及在同行评审的资助竞争过程中为所有新的样本库引入基于证据的理由。人们认识到，存在科学因素和实际原因会对生物样本的共享施加限制。然而，健康研究中的资金可用性、生产力和进展都将受益于研究生物样本库更好的共享。
