Chingarande George Rugare
Division of Medical Ethics and Law, Stellenbosch University, Cape Town, Western Cape, South Africa.
Bioethics. 2025 Sep;39(7):709-715. doi: 10.1111/bioe.13438. Epub 2025 Jun 11.
There is a rapid increase in disease registries all over the world, propelled by innovations in electronic health records and computer technologies. Unlike the developed world, where many registries are well established, many disease registries in the developing world are still in their incipient stage. Establishment of disease registries is blighted by many ethical concerns. These include but are not limited to data capture and data transfer happening without explicit patient consent; data sharing with third parties for various purposes including research, policy making and advocacy; and retrospective consent waiver. This is compounded by the lack of ethical guidelines and international best practices. This paper presents an ethical analysis of the ethics of informed consent for data registries.
在电子健康记录和计算机技术创新的推动下，全球疾病登记数量迅速增加。与许多登记制度已成熟的发达国家不同，发展中国家的许多疾病登记仍处于初始阶段。疾病登记制度的建立受到诸多伦理问题的困扰。这些问题包括但不限于在未获得患者明确同意的情况下进行数据采集和数据传输；出于研究、政策制定和宣传等各种目的与第三方共享数据；以及追溯性放弃同意。缺乏伦理准则和国际最佳实践使情况更加复杂。本文对数据登记知情同意的伦理进行了分析。
