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本文引用的文献

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Perspect Psychol Sci. 2009 May;4(3):274-90. doi: 10.1111/j.1745-6924.2009.01125.x.
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Data Interpretation in the Digital Age.数字时代的数据解读
Perspect Sci. 2014 Sep 12;22(3):397-417. doi: 10.1162/POSC_a_00140.
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Unpublished genomic data-how to share?未发表的基因组数据——如何共享?
BMC Genomics. 2014 Jan 14;15:5. doi: 10.1186/1471-2164-15-5.
4
Participants' recall and understanding of genomic research and large-scale data sharing.参与者对基因组研究和大规模数据共享的回忆与理解。
J Empir Res Hum Res Ethics. 2013 Oct;8(4):42-52. doi: 10.1525/jer.2013.8.4.42.
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Introduction to the special issue: toward a new era of databasing and data sharing for neuroimaging.特刊引言:迈向神经影像学数据库与数据共享的新时代
Neuroimage. 2013 Nov 15;82:645-6. doi: 10.1016/j.neuroimage.2013.08.044.
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Toward open sharing of task-based fMRI data: the OpenfMRI project.迈向基于任务的 fMRI 数据的开放共享:OpenfMRI 项目。
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Data sharing in large research consortia: experiences and recommendations from ENGAGE.大型研究联盟中的数据共享:ENGAGE 的经验与建议。
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8
The ethics of secondary data analysis: considering the application of Belmont principles to the sharing of neuroimaging data.二次数据分析的伦理:考虑将贝尔蒙原则应用于神经影像学数据共享。
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Evolving approaches to the ethical management of genomic data.基因组数据伦理管理方法的演进。
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大数据、开放科学与大脑:从基因组学中汲取的经验教训。

Big data, open science and the brain: lessons learned from genomics.

作者信息

Choudhury Suparna, Fishman Jennifer R, McGowan Michelle L, Juengst Eric T

机构信息

Division of Social and Transcultural Psychiatry, McGill University and Lady Davis Institute, Jewish General Hospital Montreal, QC, Canada.

Biomedical Ethics Unit, Social Studies of Medicine Department, McGill University Montreal, QC, Canada.

出版信息

Front Hum Neurosci. 2014 May 16;8:239. doi: 10.3389/fnhum.2014.00239. eCollection 2014.

DOI:10.3389/fnhum.2014.00239
PMID:24904347
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC4032989/
Abstract

The BRAIN Initiative aims to break new ground in the scale and speed of data collection in neuroscience, requiring tools to handle data in the magnitude of yottabytes (10(24)). The scale, investment and organization of it are being compared to the Human Genome Project (HGP), which has exemplified "big science" for biology. In line with the trend towards Big Data in genomic research, the promise of the BRAIN Initiative, as well as the European Human Brain Project, rests on the possibility to amass vast quantities of data to model the complex interactions between the brain and behavior and inform the diagnosis and prevention of neurological disorders and psychiatric disease. Advocates of this "data driven" paradigm in neuroscience argue that harnessing the large quantities of data generated across laboratories worldwide has numerous methodological, ethical and economic advantages, but it requires the neuroscience community to adopt a culture of data sharing and open access to benefit from them. In this article, we examine the rationale for data sharing among advocates and briefly exemplify these in terms of new "open neuroscience" projects. Then, drawing on the frequently invoked model of data sharing in genomics, we go on to demonstrate the complexities of data sharing, shedding light on the sociological and ethical challenges within the realms of institutions, researchers and participants, namely dilemmas around public/private interests in data, (lack of) motivation to share in the academic community, and potential loss of participant anonymity. Our paper serves to highlight some foreseeable tensions around data sharing relevant to the emergent "open neuroscience" movement.

摘要

“大脑计划”旨在在神经科学数据收集的规模和速度方面开辟新天地,这需要能够处理尧字节(10的24次方)量级数据的工具。其规模、投入和组织方式正被拿来与人类基因组计划(HGP)作比较,人类基因组计划堪称生物学领域“大科学”的典范。与基因组研究中的大数据趋势一致,“大脑计划”以及欧洲人类大脑计划的前景,取决于能否积累海量数据,以模拟大脑与行为之间的复杂相互作用,并为神经疾病和精神疾病的诊断及预防提供依据。神经科学领域这种“数据驱动”范式的支持者认为,利用全球各实验室产生的大量数据具有诸多方法学、伦理和经济优势,但这要求神经科学界采用数据共享和开放获取的文化,以便从中受益。在本文中,我们审视了倡导者之间数据共享的基本原理,并简要通过新的“开放神经科学”项目举例说明。然后,借鉴基因组学中经常被援引的数据共享模式,我们进而展示数据共享的复杂性,揭示机构、研究人员和参与者层面的社会学和伦理挑战,即围绕数据的公共/私人利益的困境、学术团体中(缺乏)共享的动机以及参与者匿名性的潜在丧失。我们的论文旨在突出与新兴的“开放神经科学”运动相关的数据共享方面一些可预见的紧张关系。