保密的生与死:对患者信息流的历史分析。

IF 1.3 4区 医学 Q4 SOCIAL SCIENCES, BIOMEDICAL
Biosocieties Pub Date : 2023-01-01 Epub Date: 2022-01-29 DOI:10.1057/s41292-021-00269-x
Sarah Wadmann, Mette Hartlev, Klaus Hoeyer
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引用次数: 2

摘要

健康数据可能包含敏感信息。咨询医生的人会在对他们来说重要的问题上寻求帮助:他们通常希望得到某种形式的保密。然而,随着时间的推移,保密的概念和做法发生了巨大变化。在这篇文章中,我们追溯了丹麦医疗系统的保密历史,该系统拥有世界上最集成的患者信息基础设施之一。基于对17世纪末的法律和政治文件的分析,我们发现保密起源于一种社会现象,有助于建立对医疗专业人员的信任,并逐渐发展成为公民权利的习语。最近,保密性已经让位给了更多技术官僚形式的数据保护。随着政治、法律和技术现实(保密的概念曾经提到过)发生了根本性的变化,我们认为保密已经成为Ulrik Beck所说的“僵尸类别”——即使其内容已经消失,这个概念仍然存在。如果保密已经成为一个僵尸概念,我们建议是时候讨论一下它可能会取代什么,以便在当前健康数据的政治经济中保护患者的利益。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
The life and death of confidentiality: a historical analysis of the flows of patient information.

Health data can contain sensitive information. People who consult a doctor seek help on issues that matter to them: they typically expect some form of confidentiality. However, the notion and practices of confidentiality have changed dramatically over time. In this article, we trace the history of confidentiality in the Danish healthcare system, which has one of the world's most integrated patient information infrastructures. Building on an analysis of legal and political documents dating back to the late seventeenth century, we show that confidentiality originated as a social phenomenon that helped build trust in healthcare professionals and gradually developed into an idiom of citizens rights. Lately, confidentiality has given way to more technocratic forms of data protection. As the political, legal and technological reality, which the idea of confidentiality once referred to, has radically changed, we argue that confidentiality has become what Ulrik Beck has called a 'zombie category'-a notion that lives on even if its content has passed away. If confidentiality has become a zombie concept, we suggest it is time to discuss what may take its place so that patient interests are protected in the current political economy of health data.

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来源期刊
Biosocieties
Biosocieties SOCIAL SCIENCES, BIOMEDICAL-
CiteScore
3.40
自引率
6.20%
发文量
23
期刊介绍: BioSocieties is committed to the scholarly exploration of the crucial social, ethical and policy implications of developments in the life sciences and biomedicine. These developments are increasing our ability to control our own biology; enabling us to create novel life forms; changing our ideas of ‘normality’ and ‘abnormality’; transforming our understanding of personal identity, family relations, ancestry and ‘race’; altering our social and personal expectations and responsibilities; reshaping global economic opportunities and inequalities; creating new global security challenges; and generating new social, ethical, legal and regulatory dilemmas. To address these dilemmas requires us to break out from narrow disciplinary boundaries within the social sciences and humanities, and between these disciplines and the natural sciences, and to develop new ways of thinking about the relations between biology and sociality and between the life sciences and society. BioSocieties provides a crucial forum where the most rigorous social research and critical analysis of these issues can intersect with the work of leading scientists, social researchers, clinicians, regulators and other stakeholders. BioSocieties defines the key intellectual issues at the science-society interface, and offers pathways to the resolution of the critical local, national and global socio-political challenges that arise from scientific and biomedical advances. As the first journal of its kind, BioSocieties publishes scholarship across the social science disciplines, and represents a lively and balanced array of perspectives on controversial issues. In its inaugural year BioSocieties demonstrated the constructive potential of interdisciplinary dialogue and debate across the social and natural sciences. We are becoming the journal of choice not only for social scientists, but also for life scientists interested in the larger social, ethical and policy implications of their work. The journal is international in scope, spanning research and developments in all corners of the globe. BioSocieties is published quarterly, with occasional themed issues that highlight some of the critical questions and problematics of modern biotechnologies. Articles, response pieces, review essays, and self-standing editorial pieces by social and life scientists form a regular part of the journal.
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