Clinical Broad Data Sharing Consent Resources

Genomic data sharing between clinicians, laboratories, and patients is essential for improvements in genomic medicine. The need for broad access to data, however, must be balanced with the need to respect patient autonomy and privacy, and consent should be obtained before sharing individual-level data. To facilitate this process in the clinical setting (where time and resources have historically been limited), we have developed broad data sharing consent resources for use by clinicians and clinical laboratories. 

All resources are available in English, French, Spanish, and Mandarin Chinese.

This work is described by Riggs et al. in Genetics in Medicine:

Development of a consent resource for genomic data sharing in the clinical setting

Seeking Partners

ClinGen is looking for clinics and/or laboratories that are willing to pilot the use of these materials in their practice.  We are able to add logos, etc. to materials, and are willing to explore options for custom websites and online consenting.  Please contact us at clingen@clinicalgenome.org to discuss.

One-Page Consent Form

A one-page consent form to facilitate broad genomic data sharing in the clinical setting.  Contact us to customize this document with your logo or contact information.

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Videos

Our video library includes a ten-minute explanation of key concepts outlined in the consent form and testimonials on the importance of data sharing.

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Brochure

A printable version of the information covered in the explanatory video for those that prefer written information.

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