根据韩国法律设计健康数据可移植性

W. Lee, Hyun A Bae
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摘要

最近,国会提出了两项法案,内容是在《个人信息保护法》中引入数据可携条款。这两项法案在很大程度上模仿了欧盟《通用数据保护条例》(GDPR)第20条的数据可移植性权利。我们认为,由于以下几个原因,拟议的“一刀切”条款不适合健康数据的可移植性。首先也是最重要的是,这些法案没有强制要求传输数据的互操作性,就像GDPR一样。然而,与其他一些部门不同的是,互操作性对于实现医疗保健行业数据传输的便利性至关重要,因为医疗保健IT行业高度分散,有众多供应商,每个供应商都有自己的数据格式。其次,这两项法案也以类似于GDPR的方式免除了数据可移植性中的推断数据和衍生数据。虽然这种豁免可能在个人利益和数据控制者的利益之间取得平衡,但它使数据可移植性在卫生保健领域几乎毫无价值,因为重要数据通常是推断数据和卫生保健提供者创建的衍生数据。最后,对小企业数据可移植性的豁免将与卫生保健不一致,因为初级保健诊所不可避免地是"小企业"。数据可移植性法案中发现的这些限制并不令人惊讶,因为他们的模型的核心目标是GDPR第20条,这是通过帮助用户检索占主导地位的服务提供商持有的数据来促进竞争。因此,我们认为,实现健康数据可移植性的更好方法是修改《医疗服务法》,该法已经包含了促进医疗服务提供者之间数据交换的基本措施。虽然《医疗服务法》也必须进行修订,以便在其他国家已经实施的规模上实现健康数据的可移植性,但它不会受到《个人信息保护法》所面临的跨不同行业普遍适用性的需要的限制。相反,可以在《医疗服务法》中设计更细致和更复杂的健康数据可移植性,为健康数据特有的复杂法律问题提供更明确的规定,例如互操作性、数据范围、健康信息交换和二次使用等。
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Designing Health Data Portability Under Korean Law
Two bills have recently been proposed at the Korean National Assembly to introduce data portability provisions to the Personal Information Protection Act. The two bills were largely modeled on Article 20 Right to Data Portability of European Union’s General Data Protection Regulation (“GDPR”). We argue that the proposed “one-size-fits-all” provisions are ill-suited to health data portability for a few reasons. First and foremost, the bills stop short of mandating interoperability of data being transferred, in a manner similar to the GDPR. Unlike in some other sectors, however, interoperability is critical in achieving ease of data transmission in health care, because health IT is highly fragmented with numerous vendors, each with their own data format. Secondly, the two bills exempt inferred data and derived data from data portability, also in a manner similar to the GDPR. While such exemption may be striking a balance between the interest of individuals and the interest of data controllers, it renders data portability almost valueless in the context of health care, where important data are usually inferred data and derived data created by health providers. Lastly, an exemption from data portability for small businesses will be at odds with health care, in which primary care clinics are inevitably “small businesses”. These limitations found in the data portability bills are not surprising, in light of the core objective of their model, Article 20 of the GDPR, which was to promote competition by helping users retrieve their data held by dominant service providers. Hence, we argue that a better approach to health data portability is to amend the Medical Service Act that already includes basic measures to facilitate data exchange between health providers. Although the Medical Service Act too has to be amended to implement health data portability in the scale already being implemented in other countries, it will not be limited by the need for universal applicability across different industries that the general, Personal Information Protection Act faces. Instead, more nuanced and sophisticated health data portability can be designed in the Medical Service Act that provides more clarity to complex legal issues unique to health data, such as interoperability, data scope, health information exchange and secondary use, to name a few.
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