Jwa Anita S, Norgaard Martin, Poldrack Russell A
Department of Psychology, Stanford University, Stanford, CA, United States.
Department of Computer Science, University of Copenhagen, Copenhagen, Denmark.
Imaging Neurosci (Camb). 2025 Mar 19;3. doi: 10.1162/imag_a_00508. eCollection 2025.
Sharing neuroimaging data upon a direct personal request can be challenging both for researchers who request the data and for those who agree to share their data. Unlike sharing through repositories under standardized protocols and data use/sharing agreements, each party often needs to negotiate the terms of sharing and use of data case by case. This negotiation unfolds against a complex backdrop of ethical and regulatory requirements along with technical hurdles related to data transfer and management. These challenges can significantly delay the data-sharing process, and if not properly addressed, lead to potential tensions and disputes between sharing parties. This study aims to help researchers navigate these challenges by examining what to consider during the process of data sharing and by offering recommendations and practical tips. We first divided the process of sharing data upon a direct personal request into six stages: requesting data, reviewing the applicability of and requirements under relevant laws and regulations, negotiating terms for sharing and use of data, preparing and transferring data, managing and analyzing data, and sharing the outcome of secondary analysis of data. For each stage, we identified factors to consider through a review of ethical principles for human subject research; individual institutions' and funding agencies' policies; and applicable regulations in the U.S. and E.U. We then provide practical insights from a large-scale ongoing neuroimaging data-sharing project led by one of the authors as a case study. In this case study, PET/MRI data from a total of 782 subjects were collected through direct personal requests across seven sites in the USA, Canada, the UK, Denmark, Germany, and Austria. The case study also revealed that researchers should typically expect to spend an average of 8 months on data sharing efforts, with the timeline extending up to 24 months in some cases due to additional data requests or necessary corrections. The current state of data sharing via direct requests is far from ideal and presents significant challenges, particularly for early career scientists, who often have a limited time frame-typically 2 to 3 years-to work on a project. The best practices and practical tips offered in this study will help researchers streamline the process of sharing neuroimaging data while minimizing friction and frustrations.
应个人直接请求分享神经影像数据，对于请求数据的研究人员和同意分享数据的人员来说都可能具有挑战性。与通过遵循标准化协议以及数据使用/共享协议的存储库进行分享不同，各方通常需要逐案协商数据共享和使用的条款。这种协商是在道德和监管要求的复杂背景下展开的，同时还涉及与数据传输和管理相关的技术障碍。这些挑战可能会严重拖延数据共享过程，如果处理不当，还会导致共享方之间产生潜在的紧张关系和纠纷。本研究旨在通过审视数据共享过程中需要考虑的因素，并提供建议和实用技巧，帮助研究人员应对这些挑战。我们首先将应个人直接请求分享数据的过程分为六个阶段：请求数据、审查相关法律法规的适用性和要求、协商数据共享和使用的条款、准备和传输数据、管理和分析数据以及分享数据二次分析的结果。对于每个阶段，我们通过回顾人类受试者研究的伦理原则、各个机构和资助机构的政策以及美国和欧盟的适用法规，确定了需要考虑的因素。然后，我们以第一作者领导的一个正在进行的大规模神经影像数据共享项目为例，提供了实际见解。在这个案例研究中，通过个人直接请求，在美国、加拿大、英国、丹麦、德国和奥地利的七个地点共收集了来自782名受试者的正电子发射断层扫描/磁共振成像（PET/MRI）数据。该案例研究还表明，研究人员通常预计在数据共享工作上平均花费8个月时间，在某些情况下，由于额外的数据请求或必要的修正，时间线会延长至24个月。通过直接请求进行数据共享的现状远非理想，并且带来了重大挑战，特别是对于早期职业科学家而言，他们通常只有2到3年的有限时间来开展一个项目。本研究中提供的最佳实践和实用技巧将帮助研究人员简化神经影像数据的共享过程，同时最大限度地减少摩擦和挫折。
