{"title":"欧洲健康数据空间案例研究。","authors":"Edward S. Dove","doi":"10.1002/eahr.500228","DOIUrl":null,"url":null,"abstract":"<div>\n \n <p>In May 2022, the European Commission proposed the launch of a health-specific data sharing framework called the European Health Data Space (EHDS), underpinned by legislation, for the use of electronic health data by patients and for research, innovation, policy-making, patient safety, statistics, or regulatory purposes. In this essay, I review some of its more contentious features based on the latest version of the legislative proposal. I suggest that the EHDS is a useful case study to illustrate the need for a translational bioethics approach that shines a critical analytical light on contentious aspects of large-scale research infrastructures.</p>\n </div>","PeriodicalId":36829,"journal":{"name":"Ethics & human research","volume":"46 6","pages":"29-35"},"PeriodicalIF":0.0000,"publicationDate":"2024-11-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"The European Health Data Space as a Case Study\",\"authors\":\"Edward S. Dove\",\"doi\":\"10.1002/eahr.500228\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<div>\\n \\n <p>In May 2022, the European Commission proposed the launch of a health-specific data sharing framework called the European Health Data Space (EHDS), underpinned by legislation, for the use of electronic health data by patients and for research, innovation, policy-making, patient safety, statistics, or regulatory purposes. In this essay, I review some of its more contentious features based on the latest version of the legislative proposal. I suggest that the EHDS is a useful case study to illustrate the need for a translational bioethics approach that shines a critical analytical light on contentious aspects of large-scale research infrastructures.</p>\\n </div>\",\"PeriodicalId\":36829,\"journal\":{\"name\":\"Ethics & human research\",\"volume\":\"46 6\",\"pages\":\"29-35\"},\"PeriodicalIF\":0.0000,\"publicationDate\":\"2024-11-13\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Ethics & human research\",\"FirstCategoryId\":\"1085\",\"ListUrlMain\":\"https://onlinelibrary.wiley.com/doi/10.1002/eahr.500228\",\"RegionNum\":0,\"RegionCategory\":null,\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q2\",\"JCRName\":\"Social Sciences\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Ethics & human research","FirstCategoryId":"1085","ListUrlMain":"https://onlinelibrary.wiley.com/doi/10.1002/eahr.500228","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"Social Sciences","Score":null,"Total":0}
引用次数: 0
摘要
2022 年 5 月，欧盟委员会提议启动一个名为 "欧洲健康数据空间"（European Health Data Space，EHDS）的健康专用数据共享框架，该框架以立法为基础，供患者使用电子健康数据，并用于研究、创新、决策、患者安全、统计或监管目的。在本文中，我将根据最新版本的立法提案回顾其中一些争议较大的特点。我认为，电子健康数据系统是一个有用的案例研究，可以说明需要一种转化生物伦理学方法，对大规模研究基础设施的争议方面进行批判性分析。
In May 2022, the European Commission proposed the launch of a health-specific data sharing framework called the European Health Data Space (EHDS), underpinned by legislation, for the use of electronic health data by patients and for research, innovation, policy-making, patient safety, statistics, or regulatory purposes. In this essay, I review some of its more contentious features based on the latest version of the legislative proposal. I suggest that the EHDS is a useful case study to illustrate the need for a translational bioethics approach that shines a critical analytical light on contentious aspects of large-scale research infrastructures.
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