How is Information Shared?

GenomeConnect will share the deidentified health and genomic data you provide with approved users and databases. The current approved users and databases are detailed below:

  • The Clinical Genome Resource (ClinGen): ClinGen is a project funded by the NIH that is focused on understanding the role that genetic changes play in human health and development.  This includes GenomeConnect staff, who will need access to this information to perform their job duties.  ClinGen is the guardian of the information contained within the registry and is responsible for collecting, storing and sharing the data. Clinical Genome Resource (ClinGen) staff authorized by ClinGen may also have access to individuals' deidentified genetic and health data for ClinGen related activities.
  • ClinVar: ClinVar is a publicly available database of genetic changes and their reported relationship to human health. ClinVar is maintained by the National Center for Biotechnology Information (NCBI), a group within the NIH and is available to anyone with internet access, though the most common users are doctors, researchers, and other genetics professionals. This is the main database where individuals' deidentified information is shared. Data shared never includes identifiers like name, birthday, or email address.
  • Other public and controlled access databasesThe information you submit (WITHOUT your personal identifying information) will also be shared with different databases.  This is to allow different members of the scientific community and general public to learn from your deidentified health and genetic information.  We will NEVER share your personal contact information with any database.

See a list of approved databases here