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
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 firstname.lastname@example.org to discuss.