How is Privacy Protected?

GenomeConnect is very serious about protecting the privacy of participants.  PatientCrossroads has tight security measures in place to protect the servers where your information is stored. These safeguards have achieved standards for compliance with the Health Insurance Portability and Accountability Act (HIPAA) and the Federal Information Security Modernization Act (FISMA), two federal acts that aim to protect individuals’ privacy.

Who will have access to the data contributed by GenomeConnect participants?

  • Any data that gets transferred out of GenomeConnect is deidentified, meaning personal information like name, date of birth, etc. is removed.
  • The only people with access to identifiable information about participants such as name, date of birth, etc are a limited group of registry staff. 

What information will be shared?

By participating in this registry, you will be sharing the following information:

  • Your Genetic Test Results
    • For example, if you have had a test looking for changes in a particular gene, and you upload that test result, information on that test result will be shared.
    •  If more than one genetic change was found and reported, these are called “linked variants” and may be shared together (“linked”) in some databases.
  • Your Health Information
    • It is the belief of the GenomeConnect team that individuals are often the best historians at their (or their child’s) health history, often with a more complete history than any one doctor or the electronic health record at one medical institution.
    • For example, if you report that you have had a heart defect requiring surgery, you have been diagnosed with autism, and you have diabetes, this information will be shared.

What information will NOT be shared?

  • Your Personal Identifying Information
    •  Information such as your name, date of birth, or email address will NEVER be shared with anyone other than registry staff without your permission.

Do you give out patient contact information?

  • We never share any identifying information including your email address.
  • Access to email addresses is limited to a small group of registry staff that will only use your email address to get in touch with you about your participation in GenomeConnect, provide you with information about additional research opportunities and surveys that may apply to you.