Dev World Bioeth. 2020 Mar;20(1):27-37. doi: 10.1111/dewb.12240. Epub 2019 Aug 1.
The effective collection and management of personal data of rapidly migrating populations is important for ensuring adequate healthcare and monitoring of a displaced peoples' health status. With developments in ICT data sharing capabilities, electronic personal health records (ePHRs) are increasingly replacing less transportable paper records. ePHRs offer further advantages of improving accuracy and completeness of information and seem tailored for rapidly displaced and mobile populations. Various emerging initiatives in Europe are seeking to develop migrant-centric ePHR responses. This paper highlights their importance and benefits, but also identifies a number of significant ethical, legal and social issues (ELSI) and challenges to their design and implementation, regarding (1) the kind of information that should be stored, (2) who should have access to information, and (3) potential misuse of information. These challenges need to be urgently addressed to make possible the beneficial use of ePHRs for vulnerable migrants in Europe.
有效收集和管理迅速迁移人口的个人数据,对于确保充分的医疗保健和监测流离失所者的健康状况非常重要。随着信息和通信技术数据共享能力的发展,电子个人健康记录(ePHR)正日益取代不太便于携带的纸质记录。ePHR 还具有提高信息准确性和完整性的进一步优势,似乎非常适合迅速流离失所和流动的人口。欧洲的各种新出现的举措正在寻求制定以移民为中心的 ePHR 应对措施。本文强调了它们的重要性和益处,但也确定了在设计和实施过程中存在一些重大的伦理、法律和社会问题(ELSI)和挑战,涉及到:(1)应该存储的信息类型;(2)谁可以访问信息;以及(3)信息的潜在滥用。需要紧急解决这些挑战,以便为欧洲弱势移民可能有益地使用 ePHR 铺平道路。