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...

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Bibliographic Details
Published in:Hastings Center Report Vol. 54; no. 1; pp. 15 - 20
Main Author: Contaxis, Nicole
Format: Article
Published: Wiley-Blackwell Jan2024
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Online Access:View this record in EBSCOhost
Description
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.