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Genetics in medicine : official journal of the American College of Medical Genetics
05, 2019;21 (5): 1031-1037.

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

Mahsa Shabani, Stephanie O M Dyke, Luca Marelli, Pascal Borry
Author Information
  1. Mahsa Shabani: Center for Biomedical Ethics and Law, Department of Public Health and Primary Care, University of Leuven, Leuven, Belgium. Mahsa.shabani@kuleuven.be.
  2. Stephanie O M Dyke: Montreal Neurological Institute, McGill University, Montreal, Canada.
  3. Luca Marelli: Life Sciences and Society Lab, Centre for Sociological Research, University of Leuven, Leuven, Belgium.
  4. Pascal Borry: Center for Biomedical Ethics and Law, Department of Public Health and Primary Care, University of Leuven, Leuven, Belgium.
PMID: 30293992 DOI: 10.1038/s41436-018-0316-x

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.

Keywords

clinical laboratories consent data sharing public databases variants

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MeSH Term

Consent Forms
Databases, Genetic
Genetic Privacy
Information Dissemination
Informed Consent
Laboratories
Public Policy
Journal Article Research Support, Non-U.S. Gov't
Article has an altmetric score of 10

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