Can I have your data? Recommendations and practical tips for sharing neuroimaging data upon a direct personal request

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.