The Ethics of Informed Consent for Data Registries: Moving Beyond Moral Minimalism to the High Ground.
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 st...
| Publicado en: | Bioethics Vol. 39; no. 7; pp. 709 - 716 |
|---|---|
| Autor principal: | |
| Formato: | Artículo |
| Publicado: |
Wiley-Blackwell
Sep2025
|
| Materias: | |
| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ssf&AN=188364341&site=ehost-live header: @attributes: shortDbName: ssf uiTerm: 188364341 longDbName: Social Sciences Full Text (H.W. Wilson) uiTag: AN controlInfo: bkinfo: jinfo: jid: 02699702 6PJ jtl: Bioethics issn: 02699702 maglogo: Y pubinfo: dt: Sep2025 vid: 39 iid: 7 pid: 480 pub: Wiley-Blackwell artinfo: ui: 188364341 10.1111/bioe.13438 ppf: 709 ppct: 7 formats: tig: atl: The Ethics of Informed Consent for Data Registries: Moving Beyond Moral Minimalism to the High Ground. aug: au: Chingarande, George Rugare affil: Division of Medical Ethics and Law, Stellenbosch University, Cape Town Western Cape, , South Africa su: Policy sciences Responsibility Information technology Informed consent (Medical law) Medical research Data transmission systems Data management Professional practice Reporting of diseases Electronic health records sug: subj: Policy sciences Responsibility Information technology Informed consent (Medical law) Medical research Research and Development in the Physical, Engineering, and Life Sciences (except Biotechnology) Data transmission systems Data management Professional practice Reporting of diseases Electronic health records keyword: consent waiver data registries ethical maximalism informed consent retroactive consent waiver consent waiver data registries ethical maximalism informed consent retroactive consent waiver ab: 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. pubtype: Academic Journal doctype: Article src: R language: English refInfo: copyright: @attributes: flag: N holdings: @attributes: islocal: N |
|---|