Raw Genomic Data: Storage, Access, and Sharing

Mahsa Shabani; Danya Vears; Pascal Borry

doi:10.1016/j.tig.2017.10.004

Raw Genomic Data: Storage, Access, and Sharing

Trends Genet. 2018 Jan;34(1):8-10. doi: 10.1016/j.tig.2017.10.004. Epub 2017 Nov 10.

Authors

Mahsa Shabani¹, Danya Vears², Pascal Borry²

Affiliations

¹ Center for Biomedical Ethics and Law, Department of Public Health and Primary Care, University of Leuven, Belgium. Electronic address: [email protected].
² Center for Biomedical Ethics and Law, Department of Public Health and Primary Care, University of Leuven, Belgium.

PMID: 29132689
DOI: 10.1016/j.tig.2017.10.004

Abstract

Patients are increasingly being encouraged and supported to access and control their own medical and genomic data. We argue that well-established and transparent raw genomic data retention and returning policies are imperative to enable patients to practice their rights to access and control raw data.

Keywords: access rights; genomic data; patients; raw data.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Consent Forms
Electronic Health Records
Genomics* / trends
Humans
Information Dissemination / methods*
Information Storage and Retrieval / methods*
Laboratories