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同意代码:在不断扩展的开放科学生态系统中维护同意。

Consent Codes: Maintaining Consent in an Ever-expanding Open Science Ecosystem.

机构信息

McGill Centre for Integrative Neuroscience, Department of Neurology & Neurosurgery, Faculty of Medicine and Health Sciences, Montreal Neurological Institute, McGill University, Montreal, QC, Canada.

Health Level 7 (HL7) & Veterans Health Administration, Washington, D.C, USA.

出版信息

Neuroinformatics. 2023 Jan;21(1):89-100. doi: 10.1007/s12021-022-09577-4. Epub 2022 Dec 15.

Abstract

We previously proposed a structure for recording consent-based data use 'categories' and 'requirements' - Consent Codes - with a view to supporting maximum use and integration of genomic research datasets, and reducing uncertainty about permissible re-use of shared data. Here we discuss clarifications and subsequent updates to the Consent Codes (v4) based on new areas of application (e.g., the neurosciences, biobanking, H3Africa), policy developments (e.g., return of research results), and further practical considerations, including developments in automated approaches to consent management.

摘要

我们之前提出了一种用于记录基于同意的数据使用“类别”和“要求”的结构——同意代码,旨在支持最大限度地利用和整合基因组研究数据集,并减少对共享数据可再次使用的不确定性。在这里,我们根据新的应用领域(例如神经科学、生物库、H3Africa)、政策发展(例如研究结果的回报)以及进一步的实际考虑因素(包括同意管理的自动化方法的发展),讨论了对同意代码(v4)的澄清和后续更新。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/39c0/9931855/62fbb0dc775b/12021_2022_9577_Fig1_HTML.jpg

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