How will Information be Shared?

GenomeConnect will share the deidentified health and genomic data you provide with approved users and databases, such as those described below.  Click on the link below for additional information. 

  • 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.
  • Other registered users of GenomeConnect:  The information you submit (WITHOUT your personal identifying information) could also be shared with other registered users of GenomeConnect. This could include other participants (patients, family members, etc.) and members of the scientific community (doctors, researchers, etc. who want to learn from information in the registry).
  • Other public and controlled access databases: The 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.  ClinVar is one examples of a database that may utilize your data.

Click here to be taken to the GenomeConnect Website