Canadian College of Medical Geneticists (CCMG) position statement on the storage of patient genetic and genomic information in electronic health records

The aim of this document is to provide an updated statement from the Canadian College of Medical Geneticists (CCMG) regarding the current state and some future considerations on the collection, distribution, and storage of genomic information within electronic health records (EHRs), including which aspects of genomic data might warrant special attention. The original version of this document was written by the CCMG Ethics and Public Policy committee in 2010 based on data collected via an online survey of the CCMG membership at the time. It is updated here to reflect the current state of healthcare in 2024, where EHRs are almost ubiquitously used, and genomic medicine has expanded in its breadth and scope. The document was circulated to the general membership for review and feedback and has been approved by the CCMG Board of Directors.

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Publication Details

Journal
Journal of Medical Genetics
Published
2025-05-27
DOI
https://doi.org/10.1136/jmg-2025-110629
Primary Topic
Ethics in Clinical Research
Type
article
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article

Canadian College of Medical Geneticists (CCMG) position statement on the storage of patient genetic and genomic information in electronic health records

Karim Jessa, Lauren Chad, Anne‐Marie Laberge, Lynette S. Penney et al.
Journal of Medical Genetics
Ethics in Clinical Research
article

Canadian College of Medical Geneticists (CCMG) position statement on the storage of patient genetic and genomic information in electronic health records

Karim Jessa, Lauren Chad, Anne‐Marie Laberge, Lynette S. Penney, Nolan D’Souza
article en

Abstract

The aim of this document is to provide an updated statement from the Canadian College of Medical Geneticists (CCMG) regarding the current state and some future considerations on the collection, distribution, and storage of genomic information within electronic health records (EHRs), including which aspects of genomic data might warrant special attention. The original version of this document was written by the CCMG Ethics and Public Policy committee in 2010 based on data collected via an online survey of the CCMG membership at the time. It is updated here to reflect the current state of healthcare in 2024, where EHRs are almost ubiquitously used, and genomic medicine has expanded in its breadth and scope. The document was circulated to the general membership for review and feedback and has been approved by the CCMG Board of Directors.

Journal of Medical GeneticsVol. 62(8)
Dalhousie University (CA), Izaak Walton Killam Health Centre (CA), Hospital for Sick Children (CA), Centre Hospitalier Universitaire Sainte-Justine (CA), Nova Scotia Health Authority (CA), SickKids Foundation (CA)
Peace, Justice and strong institutions
Openalex Percentile: Top 84%
Ethics in Clinical Research
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Canadian College of Medical Geneticists (CCMG) position statement on the storage of patient genetic and genomic information in electronic health records — Karim Jessa, Lauren Chad, et al. · Journal of Medical Genetics (2025) | TGRS Research Map | TGRS