BBMRI-ERIC, Graz, Austria.
BBMRI.at and Medical University Graz, Graz, Austria.
Biopreserv Biobank. 2021 Oct;19(5):414-421. doi: 10.1089/bio.2020.0144. Epub 2021 Jun 28.
Various biological resources, such as biobanks and disease-specific registries, have become indispensable resources to better understand the epidemiology and biological mechanisms of disease and are fundamental for advancing medical research. Nevertheless, biobanks and similar resources still face significant challenges to become more findable and accessible by users on both national and global scales. One of the main challenges for users is to find relevant resources using cataloging and search services such as the BBMRI-ERIC Directory, operated by European Research Infrastructure on Biobanking and Biomolecular Resources (BBMRI-ERIC), as these often do not contain the information needed by the researchers to decide if the resource has relevant material/data; these resources are only weakly characterized. Hence, the researcher is typically left with too many resources to explore and investigate. In addition, resources often have complex procedures for accessing holdings, particularly for depletable biological materials. This article focuses on designing a system for effective negotiation of access to holdings, in which a researcher can approach many resources simultaneously, while giving each resource team the ability to implement their own mechanisms to check if the material/data are available and to decide if access should be provided. The BBMRI-ERIC has developed and implemented an access and negotiation tool called the BBMRI-ERIC Negotiator. The Negotiator enables access negotiation to more than 600 biobanks from the BBMRI-ERIC Directory and other discovery services such as GBA/BBMRI-ERIC Locator or RD-Connect Finder. This article summarizes the principles that guided the design of the tool, the terminology used and underlying data model, request workflows, authentication and authorization mechanism(s), and the mechanisms and monitoring processes to stimulate the desired behavior of the resources: to effectively deliver access to biological material and data.
各种生物资源，如生物银行和特定疾病的登记处，已成为更好地了解疾病的流行病学和生物学机制的不可或缺的资源，也是推进医学研究的基础。然而，生物银行和类似的资源在提高用户在国家和全球范围内的可发现性和可访问性方面仍然面临重大挑战。用户面临的主要挑战之一是使用编目和搜索服务（如由欧洲生物银行和生物分子资源研究基础设施（BBMRI-ERIC）运营的 BBMRI-ERIC 目录）来找到相关资源，因为这些服务通常不包含研究人员决定资源是否具有相关材料/数据所需的信息；这些资源的特征描述非常薄弱。因此，研究人员通常需要探索和调查的资源太多。此外，资源通常对获取资源的持有权有复杂的程序，特别是对于可耗尽的生物材料。本文重点介绍设计一个有效的资源持有权协商系统，研究人员可以同时访问多个资源，同时赋予每个资源团队实施自己的机制的能力，以检查材料/数据是否可用，并决定是否应提供访问权限。BBMRI-ERIC 开发并实施了一个名为 BBMRI-ERIC Negotiator 的访问和协商工具。该协商器使访问协商能够涵盖来自 BBMRI-ERIC 目录和其他发现服务（如 GBA/BBMRI-ERIC Locator 或 RD-Connect Finder）的 600 多个生物银行。本文总结了指导工具设计的原则、使用的术语和基础数据模型、请求工作流程、身份验证和授权机制以及激励资源采取所需行为的机制和监控流程：有效地提供生物材料和数据的访问权限。
