{"title":"The Ethics of Informed Consent for Data Registries: Moving Beyond Moral Minimalism to the High Ground.","authors":"George Rugare Chingarande","doi":"10.1111/bioe.13438","DOIUrl":null,"url":null,"abstract":"<p><p>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.</p>","PeriodicalId":55379,"journal":{"name":"Bioethics","volume":" ","pages":""},"PeriodicalIF":1.7000,"publicationDate":"2025-06-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Bioethics","FirstCategoryId":"98","ListUrlMain":"https://doi.org/10.1111/bioe.13438","RegionNum":2,"RegionCategory":"哲学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"ETHICS","Score":null,"Total":0}
引用次数: 0
Abstract
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.
期刊介绍：
As medical technology continues to develop, the subject of bioethics has an ever increasing practical relevance for all those working in philosophy, medicine, law, sociology, public policy, education and related fields.
Bioethics provides a forum for well-argued articles on the ethical questions raised by current issues such as: international collaborative clinical research in developing countries; public health; infectious disease; AIDS; managed care; genomics and stem cell research. These questions are considered in relation to concrete ethical, legal and policy problems, or in terms of the fundamental concepts, principles and theories used in discussions of such problems.
Bioethics also features regular Background Briefings on important current debates in the field. These feature articles provide excellent material for bioethics scholars, teachers and students alike.
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