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大脑倡议数据共享生态系统:特征、挑战、益处和机遇。

The BRAIN Initiative data-sharing ecosystem: Characteristics, challenges, benefits, and opportunities.

机构信息

Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, United States.

Department of History, Purdue University, West Lafayette, United States.

出版信息

Elife. 2024 Nov 27;13:e94000. doi: 10.7554/eLife.94000.

Abstract

In this paper, we provide an overview and analysis of the BRAIN Initiative data-sharing ecosystem. First, we compare and contrast the characteristics of the seven BRAIN Initiative data archives germane to data sharing and reuse, namely data submission and access procedures and aspects of interoperability. Second, we discuss challenges, benefits, and future opportunities, focusing on issues largely specific to sharing human data and drawing on = 34 interviews with diverse stakeholders. The BRAIN Initiative-funded archive ecosystem faces interoperability and data stewardship challenges, such as achieving and maintaining interoperability of data and archives and harmonizing research participants' informed consents for tiers of access for human data across multiple archives. Yet, a benefit of this distributed archive ecosystem is the ability of more specialized archives to adapt to the needs of particular research communities. Finally, the multiple archives offer ample raw material for network evolution in response to the needs of neuroscientists over time. Our first objective in this paper is to provide a guide to the BRAIN Initiative data-sharing ecosystem for readers interested in sharing and reusing neuroscience data. Second, our analysis supports the development of empirically informed policy and practice aimed at making neuroscience data more findable, accessible, interoperable, and reusable.

摘要

在本文中,我们提供了对 BRAIN 倡议数据共享生态系统的概述和分析。首先,我们比较和对比了与数据共享和重用相关的七个 BRAIN 倡议数据档案的特点,即数据提交和访问程序以及互操作性方面。其次,我们讨论了挑战、好处和未来的机会,重点关注主要与人类数据共享相关的问题,并借鉴了 34 位不同利益相关者的访谈。BRAIN 倡议资助的档案生态系统面临着互操作性和数据管理方面的挑战,例如实现和维护数据和档案的互操作性,以及协调多个档案中人类数据的不同访问层的研究参与者的知情同意。然而,这种分布式档案生态系统的一个好处是,更专业的档案能够适应特定研究社区的需求。最后,多个档案为网络进化提供了充足的原始材料,以满足神经科学家随时间变化的需求。本文的首要目标是为有兴趣共享和重用神经科学数据的读者提供对 BRAIN 倡议数据共享生态系统的指南。其次,我们的分析支持制定经验性的政策和实践,旨在使神经科学数据更易发现、可访问、互操作和可重复使用。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/5e8a/11602185/3c0d581b623b/elife-94000-fig1.jpg

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