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The challenge of local consent requirements for global critical care databases.

作者信息

McLennan Stuart, Shaw David, Celi Leo Anthony

机构信息

Institute for Biomedical Ethics, University of Basel, Bernoullistrasse 28, 4056, Basel, Switzerland.

Division of Pulmonary, Critical Care, and Sleep Medicine, Beth Israel Deaconess Medical Center, Boston, MA, USA.

出版信息

Intensive Care Med. 2019 Feb;45(2):246-248. doi: 10.1007/s00134-018-5257-y. Epub 2018 Jun 19.

DOI:10.1007/s00134-018-5257-y
PMID:29922844
Abstract
摘要

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Data-driven sudden cardiac arrest research in Europe: Experts' perspectives on ethical challenges and governance strategies.

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Rules for processing genetic data for research purposes in view of the new EU General Data Protection Regulation.为了符合新的欧盟一般数据保护条例，在研究目的下处理基因数据的规则。
Eur J Hum Genet. 2018 Feb;26(2):149-156. doi: 10.1038/s41431-017-0045-7. Epub 2017 Nov 29.
2
The Effect of the General Data Protection Regulation on Medical Research.《通用数据保护条例》对医学研究的影响
J Med Internet Res. 2017 Feb 24;19(2):e47. doi: 10.2196/jmir.7108.
3
Towards an ethics safe harbor for global biomedical research.迈向全球生物医学研究的伦理安全港。
欧洲数据驱动的心脏骤停研究：专家对伦理挑战和治理策略的看法
Resusc Plus. 2023 Jun 16;15:100414. doi: 10.1016/j.resplu.2023.100414. eCollection 2023 Sep.
4
You Can't Have AI Both Ways: Balancing Health Data Privacy and Access Fairly.人工智能不能两全其美：公平平衡健康数据隐私与获取
Front Genet. 2022 Jun 13;13:929453. doi: 10.3389/fgene.2022.929453. eCollection 2022.
5
Practices and Attitudes of Bavarian Stakeholders Regarding the Secondary Use of Health Data for Research Purposes During the COVID-19 Pandemic: Qualitative Interview Study.巴伐利亚利益相关者在 COVID-19 大流行期间将健康数据用于研究目的的二次使用的实践和态度：定性访谈研究。
J Med Internet Res. 2022 Jun 27;24(6):e38754. doi: 10.2196/38754.
6
Sharing ICU Patient Data Responsibly Under the Society of Critical Care Medicine/European Society of Intensive Care Medicine Joint Data Science Collaboration: The Amsterdam University Medical Centers Database (AmsterdamUMCdb) Example.在重症医学学会/欧洲危重病医学学会联合数据科学协作下负责任地共享 ICU 患者数据：阿姆斯特丹大学医学中心数据库（AmsterdamUMCdb）示例。
Crit Care Med. 2021 Jun 1;49(6):e563-e577. doi: 10.1097/CCM.0000000000004916.
7
COVID-19: Putting the General Data Protection Regulation to the Test.新冠病毒：对一般数据保护条例的考验。
JMIR Public Health Surveill. 2020 May 29;6(2):e19279. doi: 10.2196/19279.
8
Critical Care, Critical Data.重症监护，关键数据。
Biomed Eng Comput Biol. 2019 Jun 12;10:1179597219856564. doi: 10.1177/1179597219856564. eCollection 2019.
9
The PLOS ONE collection on machine learning in health and biomedicine: Towards open code and open data.PLOS ONE 机器学习在健康和生物医学中的应用特刊：迈向开放代码和开放数据。
PLoS One. 2019 Jan 15;14(1):e0210232. doi: 10.1371/journal.pone.0210232. eCollection 2019.
J Law Biosci. 2014 Feb 14;1(1):3-51. doi: 10.1093/jlb/lst002. eCollection 2014 Mar.
4
MIMIC-III, a freely accessible critical care database.MIMIC-III，一个免费获取的重症监护数据库。
Sci Data. 2016 May 24;3:160035. doi: 10.1038/sdata.2016.35.
5
The European Parliament proposal for the new EU General Data Protection Regulation may severely restrict European epidemiological research.欧洲议会关于新的欧盟《通用数据保护条例》的提案可能会严重限制欧洲的流行病学研究。
Eur J Epidemiol. 2014 Apr;29(4):227-30. doi: 10.1007/s10654-014-9909-0. Epub 2014 May 7.
6
"Big data" in the intensive care unit. Closing the data loop.重症监护病房中的“大数据”。闭合数据循环。
Am J Respir Crit Care Med. 2013 Jun 1;187(11):1157-60. doi: 10.1164/rccm.201212-2311ED.
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