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Checklist for gene/disease‐specific variation database curators to enable ethical data management

Ekong, R; Vihinen, M; (2019) Checklist for gene/disease‐specific variation database curators to enable ethical data management. Human Mutation , 40 (10) pp. 1634-1640. 10.1002/humu.23881. Green open access

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Abstract

Databases with variant and phenotype information are essential for advancing research and improving the health and welfare of individuals. These resources require data to be collected, curated and shared among relevant specialties to maximise impact. The increasing generation of data which must be shared both nationally and globally for maximal effect presents important ethical and privacy concerns. Database curators need to ensure that their work conform to acceptable ethical standards. A Working Group of the Human Variome Project had the task of updating and streamlining ethical guidelines for locus-specific/gene variant database curators. In this article, we present practical and achievable steps which should assist database curators in carrying out their responsibilities within acceptable ethical norms. This article is protected by copyright. All rights reserved.

Type: Article
Title: Checklist for gene/disease‐specific variation database curators to enable ethical data management
Location: United States
Open access status: An open access version is available from UCL Discovery
DOI: 10.1002/humu.23881
Publisher version: https://doi.org/10.1002/humu.23881
Language: English
Additional information: This version is the author accepted manuscript. For information on re-use, please refer to the publisher’s terms and conditions.
Keywords: Practical checklist, data collection, data curation, database curators, ethical data management, genetic variation databases, sharing variant data
UCL classification: UCL
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Life Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Life Sciences > Div of Biosciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Life Sciences > Div of Biosciences > Genetics, Evolution and Environment
URI: https://discovery.ucl.ac.uk/id/eprint/10078896
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