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RESEARCH PRODUCT
Communal data work: Data sharing and re-use in clinical genetics
Polyxeni VassilakopoulouMargunn Aanestadsubject
medicine.medical_specialtyKnowledge managementDatabases FactualHealth InformaticsContext (language use)02 engineering and technology050905 science studiesHealth Information Management020204 information systemsGenetics0202 electrical engineering electronic engineering information engineeringClinical geneticmedicineHumansGenetic TestingSociologyCooperative BehaviorInformation Disseminationbusiness.industry05 social sciencesSequence Analysis DNAPeer reviewData sharingWork (electrical)VDP::Samfunnsvitenskap: 200Medical genetics0509 other social sciencesbusinessSoftwaredescription
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.
| year | journal | country | edition | language |
|---|---|---|---|---|
| 2019-01-01 | Health Informatics Journal |