National electronic health record systems controlled (at least in parts) by the patient are becoming increasingly common. During a pandemic, data stored in such records could be used by health authorities to identify persons with a particular health risk. In this contribution, the authors focus-from the perspective of law and medical ethics-on the question whether such state access to data could, under certain circumstances, be disadvantageous to a person’s state of health in the long run. This may be the case if the data extracted is not only used for the purpose of informing persons, but serves as a basis for measures taken against the will of the individual concerned. This might be perceived as a “breach of trust” and could result in persons opting out of or not opting into an electronic health record system. Such unintended consequences raise concerns from an ethical and a legal point of view. It follows that, even in times of a pandemic, access to personal data stored in patient-controlled health records should be used as a last resort only. While this contribution deals with the legal framework within the EU, its considerations are transferable to other national electronic health record systems.

中文翻译：

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在大流行期间使用电子健康记录中的数据-法律和道德评估。

由患者控制（至少部分）的国家电子健康记录系统变得越来越普遍。在大流行期间，卫生当局可以使用存储在此类记录中的数据来识别具有特定健康风险的人。在这一贡献中，作者从法律和医学伦理学的角度着眼于这样的问题：在某些情况下，这种状态下的数据访问从长远来看是否可能不利于一个人的健康状态。如果提取的数据不仅用于通知个人，而且还作为违反有关个人意愿采取措施的基础，则可能是这种情况。这可能被视为“违反信任”，并可能导致人们选择退出或不选择电子健康记录系统。从伦理和法律的角度来看，这种意想不到的后果引起了人们的关注。因此，即使在大流行时期，访问存储在患者控制的健康记录中的个人数据也应仅作为最后的手段。尽管此贡献涉及欧盟内部的法律框架，但其考虑因素可以转移到其他国家电子健康记录系统。