New Meanings in the Archive: Privacy, Technological Change and the Status of Sources**

IF 0.6 2区 哲学 Q2 HISTORY & PHILOSOPHY OF SCIENCE
Jenny Bangham
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引用次数: 0

Abstract

This essay reflects on how technological changes in biomedicine can affect what archival sources are available for historical research. Historians and anthropologists have examined the ways in which old biomedical samples can be made to serve novel scientific purposes, such as when decades-old frozen tissue specimens are analyzed using new genomic techniques. Those uses are also affected by shifting ethical regimes, which affect who can do what with old samples, or whether anything can be done with them at all. Archival collections are subject to similar dynamics, as institutional change and shifts in ethical guidelines and privacy laws affect which sources can be accessed and which are closed. I witnessed just such a change during my research into human genetics using archives in the Wellcome Collection. A few years into my project, those archives had their privacy conditions reassessed, and I saw how some sources previously seen as neutral were now understood to contain personal sensitive information. This paper describes the conditions of this shift—including the effects of technological change, new ethical considerations, and changing laws around privacy. I reflect on how these affected my understanding of the history of human genetics, and how I and others might narrate it.

档案的新意义:隐私、技术变革与来源地位**
这篇文章反映了生物医学的技术变化如何影响历史研究中可用的档案来源。历史学家和人类学家已经研究了将古老的生物医学样本用于新的科学目的的方法,例如使用新的基因组技术分析几十年前的冷冻组织样本。这些用途也受到道德制度变化的影响,这影响到谁可以用旧样本做什么,或者是否可以用它们做任何事情。档案收藏也受到类似的动态影响,因为制度的变化和道德准则和隐私法的变化会影响哪些来源可以访问,哪些可以关闭。在我研究人类遗传学的过程中,我使用了惠康收藏的档案,见证了这样的变化。在我的项目进行了几年之后,这些档案的隐私状况得到了重新评估,我看到了一些以前被视为中立的来源现在被理解为包含个人敏感信息。本文描述了这种转变的条件——包括技术变革的影响、新的伦理考虑以及围绕隐私的不断变化的法律。我思考这些是如何影响我对人类遗传学历史的理解的,以及我和其他人可能会如何叙述它。
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
Berichte zur Wissenschaftsgeschichte
Berichte zur Wissenschaftsgeschichte 社会科学-科学史与科学哲学
CiteScore
0.80
自引率
16.70%
发文量
43
审稿时长
>12 weeks
期刊介绍: Die Geschichte der Wissenschaften ist in erster Linie eine Geschichte der Ideen und Entdeckungen, oft genug aber auch der Moden, Irrtümer und Missverständnisse. Sie hängt eng mit der Entwicklung kultureller und zivilisatorischer Leistungen zusammen und bleibt von der politischen Geschichte keineswegs unberührt.
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