How will the genetic data be stored and shared?

There are two types of databases in the project. The first database is protected, which means that only a select group of approved researchers will have access to it. The second database is public and does not include as much information about the donor. Both of the databases are anonymous and will not include donors’ names or other information that we know could identify them.

The protected database will include the donor’s full (inherited) genetic information and other anonymous information from the donor’s medical record, like health or disease history. This protected database will only be accessible to researchers who have been approved.

There will also be a public online database that is separate from the protected database. The public database will include non-inherited genetic data that is unique to each donor’s tissues or cells. Everyone can access the public database, but this database will not include any information that we know could identify the donor, like names.