Institute of History and Ethics in Medicine, Technical University of Munich, Munich, Germany.
Division of Pulmonary, Critical Care, and Sleep Medicine, Beth Israel Deaconess Medical Center, Boston, MA, United States.
JMIR Public Health Surveill. 2020 May 29;6(2):e19279. doi: 10.2196/19279.
The coronavirus disease (COVID-19) pandemic is very much a global health issue and requires collaborative, international health research efforts to address it. A valuable source of information for researchers is the large amount of digital health data that are continuously collected by electronic health record systems at health care organizations. The European Union's General Data Protection Regulation (GDPR) will be the key legal framework with regard to using and sharing European digital health data for research purposes. However, concerns persist that the GDPR has made many organizations very risk-averse in terms of data sharing, even if the regulation permits such sharing. Health care organizations focusing on individual risk minimization threaten to undermine COVID-19 research efforts. In our opinion, there is an ethical obligation to use the research exemption clause of the GDPR during the COVID-19 pandemic to support global collaborative health research efforts. Solidarity is a European value, and here is a chance to exemplify it by using the GDPR regulatory framework in a way that does not hinder but actually fosters solidarity during the COVID-19 pandemic.
新型冠状病毒病（COVID-19）大流行是一个非常严重的全球卫生问题，需要开展协作性的国际卫生研究工作来应对。对于研究人员来说，电子健康记录系统不断收集的大量数字健康数据是一个有价值的信息来源。欧盟的《通用数据保护条例》（GDPR）将是使用和共享欧洲数字健康数据进行研究的主要法律框架。然而，人们仍然担心，GDPR 使得许多组织在数据共享方面非常回避风险，即使该法规允许这种共享。关注个体风险最小化的医疗机构可能会破坏 COVID-19 研究工作。我们认为，在 COVID-19 大流行期间，有道德义务利用 GDPR 的研究豁免条款来支持全球合作性卫生研究工作。团结是欧洲的价值观，现在有机会在 COVID-19 大流行期间利用 GDPR 监管框架，以一种不会阻碍反而实际上促进团结的方式来体现这一价值观。
