Hidden Ethical Challenges in Health Data Infrastructure
Data infrastructure includes the bureaucratic, technical, and social mechanisms that assist in actions like data management, analysis, storage, and sharing. While issues like data sharing have been addressed in depth in bioethical literature, data infrastructure presents its own ethical consideratio...
| Published in: | The Hastings Center report |
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| Main Author: | |
| Format: | Electronic Article |
| Language: | English |
| Check availability: | HBZ Gateway |
| Journals Online & Print: | Drawer...
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| Fernleihe: | Fernleihe für die Fachinformationsdienste |
| Published: |
Wiley
2024
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| In: |
The Hastings Center report
Year: 2024, Volume: 54, Issue: 1, Pages: 15-19 |
| Further subjects: | B
information ethics
B data management B data ethics B research infrastructure B data sharing |
| Online Access: |
Volltext (lizenzpflichtig) Volltext (lizenzpflichtig) |
| Summary: | Data infrastructure includes the bureaucratic, technical, and social mechanisms that assist in actions like data management, analysis, storage, and sharing. While issues like data sharing have been addressed in depth in bioethical literature, data infrastructure presents its own ethical considerations, apart from the actions (such as data sharing and data analysis) that it enables. This essay outlines some of these considerations—namely, the ethics of efficiency, the visibility of infrastructure, the power of standards, and the impact of new technologies—in order to invite the bioethics community to participate in conversations about infrastructure, as their expertise is both needed and welcomed. |
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| ISSN: | 1552-146X |
| Contains: | Enthalten in: Hastings Center, The Hastings Center report
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| Persistent identifiers: | DOI: 10.1002/hast.1564 |