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Use of tissue and health data: attachments and detachments among an enabling public
New Genetics and Society ( IF 1.8 ) Pub Date : 2023-05-25 , DOI: 10.1080/14636778.2023.2215912
Lea Skovgaard 1 , Mette N. Svendsen 1
Affiliation  

Personalized medicine aims at tailoring treatment to the individual person through the sourcing of multiple health data from the population. The realization of these ambitions rest on the ability to reuse health data. But what does it take to reuse tissue and data collected from individuals in connection with treatment, for future purposes? It takes an “enabling public” consisting of not only people providing tissue and data, but also clinicians, researchers, and civil servants. Based on fieldwork and interviews from Denmark, we investigate how use attaches tissue and data to various actors in the enabling public. We argue that multiple forms of attachments and detachments co-exist and that these persist over time. Attentiveness to the character and coexistence of these attachments is crucial in discussions of the role different actors should play in the governance of tissue and data.



中文翻译:

组织和健康数据的使用:支持公众之间的依恋和分离

个性化医疗旨在通过从人群中获取多种健康数据来为个人量身定制治疗方案。这些雄心壮志的实现取决于重用健康数据的能力。但是,为了未来的目的,如何重新利用从个人收集的与治疗相关的组织和数据呢?它需要“赋能公众”,不仅包括提供组织和数据的人,还包括临床医生、研究人员和公务员。基于丹麦的实地调查和采访,我们调查了使用如何将组织和数据附加到支持公众的各种参与者身上。我们认为,多种形式的依恋和分离并存,并且随着时间的推移,这些形式会持续存在。

更新日期:2023-05-25
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