Trust, Transparency, and the Fragile Promise of Data Governance in the Era of Modernization.

IF 1.3 4区 哲学 Q2 ETHICS
Journal of Law Medicine & Ethics Pub Date : 2026-01-01 Epub Date: 2026-04-16 DOI:10.1017/jme.2026.10234
Fallon Julia Cochlin, Regen Weber-Fares, Jami Crespo, William Sage, Cason Daniel Schmit
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引用次数: 0

Abstract

Public health data modernization in the United States has accelerated since COVID-19 exposed systemic weaknesses in fragmented data infrastructure and governance. Technical solutions have advanced, but legal and relational barriers still complicate data sharing across jurisdictions. Traditionally, interjurisdictional data sharing has relied on individually negotiated Data Use Agreements (DUAs), a process that is both resource-heavy and often opaque. To address this, the Centers for Disease Control and Prevention have proposed a Core DUA to standardize terms and reduce administrative burden. However, its success depends on trust - a fragile foundation increasingly strained by politicization, perceived lack of transparency, and controversial federal actions involving sensitive data. Jurisdictional concerns about compliance, security, and misuse underscore the need for governance frameworks that prioritize clarity, reciprocity, and accountability. Coercive approaches risk deepening fragmentation and undermining collaborative governance. Ultimately, modernization efforts will fail without supporting trust as the cornerstone of public health data governance. This article examines legal variation, transactional friction, and evolving jurisdictional perspectives to illuminate the critical role of trust in shaping the future of public health data systems.

信任、透明度和现代化时代数据治理的脆弱承诺。
自2019冠状病毒病暴露出支离破碎的数据基础设施和治理方面的系统性弱点以来,美国的公共卫生数据现代化进程加快。技术解决方案已经取得进展,但法律和关系障碍仍然使跨司法管辖区的数据共享复杂化。传统上,跨司法管辖区的数据共享依赖于单独协商的数据使用协议(DUAs),这是一个资源繁重且通常不透明的过程。为了解决这个问题,疾病控制和预防中心提出了核心DUA,以规范术语并减轻行政负担。然而,它的成功取决于信任——这是一个脆弱的基础,由于政治化、缺乏透明度和涉及敏感数据的有争议的联邦行动而日益紧张。关于遵从性、安全性和滥用的管辖权问题强调了对优先考虑明确性、互惠性和责任的治理框架的需求。强制性做法有加深分裂和破坏协作治理的风险。最终,如果不支持信任作为公共卫生数据治理的基石,现代化努力将会失败。本文考察了法律差异、交易摩擦和不断演变的司法视角,以阐明信任在塑造公共卫生数据系统未来中的关键作用。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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来源期刊
Journal of Law Medicine & Ethics
Journal of Law Medicine & Ethics 医学-医学:法
CiteScore
2.90
自引率
4.80%
发文量
70
审稿时长
6-12 weeks
期刊介绍: Material published in The Journal of Law, Medicine & Ethics (JLME) contributes to the educational mission of The American Society of Law, Medicine & Ethics, covering public health, health disparities, patient safety and quality of care, and biomedical science and research. It provides articles on such timely topics as health care quality and access, managed care, pain relief, genetics, child/maternal health, reproductive health, informed consent, assisted dying, ethics committees, HIV/AIDS, and public health. Symposium issues review significant policy developments, health law court decisions, and books.
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