ClinVar, a publicly available database hosted by the National Center for Biotechnology Information (NCBI) aggregates information about sequence variation and its relationship to human health. Click here to learn more about the database and how to use it.

Interested in submitting data? Click here for the information and resources you need to get started, including sample IRB templates.

ClinGen encourages the responsible sharing of phenotypic data from laboratories and clinicians. Learn more about resources available to facilitate the collection of phenotype data in structured formats.

SCRP is a grass-roots effort to encourage open sharing of variant information, particularly variants within BRCA1 and BRCA2.

GenomeConnect is the ClinGen Patient Portal, allowing patients to share their own phenotype and genotype information. Click here to learn more.

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.