Genomic testing creates large amounts of data that needs to be stored securely. Your genomic data is unique to you and the handling of this data is regulated by Commonwealth and state and territory privacy laws.
Keeping your genomic information safe
Your genomics test results are private and form part of your medical records. They won’t be shared outside the health system unless you give permission, except where disclosure is required by law.
Sharing your genomic data for your family members
Your healthcare professional may also ask for your consent to share your results with another healthcare professional. To help them to inform your or a family member’s health care. In these instances, your results will be shared securely and confidentially.
Sharing your genomic data to clinical databases
By comparing your DNA with others in secure databases, health professionals can better understand which genetic changes are expected variation between people and which might cause health problems.
Some DNA changes are well understood – either they’re common and not linked to illness or they’re known to associated with specific medical conditions. Sometimes, we find changes that we don’t fully understand yet. These are called variants of uncertain significance.
By sharing your deidentified genomic data, health information and sometimes your ancestry can help researchers and health professionals learn more about how genes affect health. Over time, this could lead to better diagnoses – not just for you, but for others too.