Communal data work: Data sharing and re-use in clinical genetics

被引：10

作者：

Vassilakopoulou, Polyxeni ^{[1
]}

Aanestad, Margunn ^{[2
]}

机构：

[1] Univ Agder, Kristiansand, Norway

[2] Univ Oslo, Oslo, Norway

来源：

HEALTH INFORMATICS JOURNAL | 2019年 / 25卷 / 03期

基金：

芬兰科学院;

关键词：

data work; distributed communities; information registration and retrieval; re-usable data; shareable data; INFORMATION; SCIENCE; TOOL;

D O I：

10.1177/1460458219833117

中图分类号：

R19 [保健组织与事业（卫生事业管理）];

学科分类号：

摘要：

In this article, we examine work with communal data in the context of clinical genetic testing. Drawing from prior research on digital research infrastructures and from the analysis of our empirical data on genetic testing, we describe how data generated in laboratories distributed all over the world are shared and re-used. Our research findings point to six different human-driven activities related to expanding, disambiguating, sanitizing and assessing the relevance, validity and combinability of data. We contribute to research within Health Informatics with a framework that foregrounds human-driven activities for data interoperability.

引用

页码：511 / 525

页数：15

共 48 条

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