Literature DB >> 30293992

Variant data sharing by clinical laboratories through public databases: consent, privacy and further contact for research policies.

Mahsa Shabani1, Stephanie O M Dyke2, Luca Marelli3, Pascal Borry4.   

Abstract

Access to detailed variant data is key to inform and verify the interpretation of genomic data. Clinical laboratories can play a significant role in sharing patients' data through public variant databases. To facilitate data sharing, various public databases, such as ClinVar and DECIPHER have been established, which accept data submission from laboratories, clinicians, researchers, and patients. Despite clear benefits to sharing, questions may arise about the adequate form of consent to be obtained from patients when sharing data from their clinical tests through public databases. In this paper, we provide an overview and critical analysis of the relevant consent policies of the major public databases, and of the consent forms of clinical laboratories that share variant data via ClinVar.

Entities:  

Keywords:  clinical laboratories; consent; data sharing; public databases; variants

Mesh:

Year:  2018        PMID: 30293992     DOI: 10.1038/s41436-018-0316-x

Source DB:  PubMed          Journal:  Genet Med        ISSN: 1098-3600            Impact factor:   8.822


  1 in total

1.  Clinical genomics, big data, and electronic medical records: reconciling patient rights with research when privacy and science collide.

Authors:  Jennifer Kulynych; Henry T Greely
Journal:  J Law Biosci       Date:  2017-01-15
  1 in total
  3 in total

1.  Recent Developments in Privacy-Preserving Mining of Clinical Data.

Authors:  Chance Desmet; Diane J Cook
Journal:  ACM IMS Trans Data Sci       Date:  2021-11

2.  Rethinking the ethical principles of genomic medicine services.

Authors:  Stephanie B Johnson; Ingrid Slade; Alberto Giubilini; Mackenzie Graham
Journal:  Eur J Hum Genet       Date:  2019-09-18       Impact factor: 4.246

3.  Genomic variant sharing: a position statement.

Authors:  Caroline F Wright; James S Ware; Anneke M Lucassen; Alison Hall; Anna Middleton; Nazneen Rahman; Sian Ellard; Helen V Firth
Journal:  Wellcome Open Res       Date:  2019-02-05
  3 in total

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