How We Protect Your Genetic Data at Eugene

At Eugene, protecting your privacy isn’t an add-on – it’s built into everything we do. From how we design our services and choose our laboratory partners to how we store your information, every step is designed to keep your data safe, private and in your control. We work only with accredited laboratories, use encrypted and access-controlled systems, and meet strict international security standards including SOC2. We will never sell your personal or genetic information and we will never share it without your permission.

What does “sample storage” mean for you?

When you take a genetic test, you provide a saliva or blood sample. Before and after testing, that physical sample is stored securely for a short period so the laboratory can complete the analysis and meet regulatory requirements. Once testing is complete, samples are destroyed in line with Australian and international regulations.

How Eugene stores your sample

We hold your saliva sample only until you complete your Consent. Once consent is completed, we send your full sample to the accredited laboratory performing your test. The sample is not returned to us after testing.
If consent isn’t completed within 90 days, the sample is securely discarded.

How our partner labs store your sample

Australian labs (e.g., VCGS, Lumi, Fulgent Australia):

Physical samples are usually kept for a short, regulated period unless required longer for quality control or accreditation requirements.
For the Core and Couples Carrier tests: contact VCGS to request your sample to be destroyed. Details provided below. DNA extracts may be stored longer where permitted; some may be kept indefinitely while space allows.
For all other tests, your sample will be discarded within 90 days from the date a report has been issued by our partner labs Labcorp/Invitae and Fulgent.
Unacceptable specimens may be discarded after 14 days.

Fulgent Genetics USA (for Comprehensive carrier screening, Cancer Risk, Heart Health, Preventative bundles):

Extracted DNA is stored for a minimum of 2 years as required under CLIA (Clinical Laboratory Improvement Amendments) and CAP (College of American Pathologists) regulations.
DNA extracts may be stored longer where permitted; some may be kept indefinitely while space allows.

After this period the samples are destroyed by our partner labs.

What does “data storage” mean for you?

Your genetic test creates several types of information: your clinical report, counselling notes, and (where genetic testing has occurred) raw sequencing data. These different types of information are stored for different lengths of time to support your ongoing care, meet medical regulations and ensure safe clinical practice.

What we store at Eugene

Eugene holds your genetic test result, test order form, and other personal information you provided to us during your onboarding process and interactions with Eugene, such as your name, date of birth, contact information, payment information, and any health information you shared with us. This information was collected primarily to facilitate your genetic test, and we are required to retain this information in accordance with both the Privacy Act 1988 (Cth) and the Health Records Act 2001 (Vic). Under the Health Records Act 2001 (Vic) we are required to retain health information (which includes the test result and order form, and personal information collected in providing a health service) for a minimum prescribed retention period, which for adults is usually 7 years from the date of last service.

All data is stored securely within Australia in encrypted, access-controlled systems.

What our partner labs store

Raw sequencing data (e.g., in FASTQ, BAM, VCF file formats):

Stored by partner laboratories (e.g., Fulgent Genetics USA & Fulgent Genetics AU) in HIPAA-compliant, encrypted systems.
Typically kept 7–10 years (or per local regulatory requirements: AU minimum 4–10 years, US minimum 2 years).

We explain raw sequencing data in more detail below.

Your test results, lab order, name, DOB, email address and order address are shared with our partner labs Lumi Health and VCGS in the case of Core and Couples tests as part of the Medicare benefit attached to these tests.

De-identified data

We may keep de-identified or aggregated information for quality assurance, regulatory compliance, and service improvement.
This information cannot identify you.
We do not sell personal or genetic data to any third party.
Our partner labs may also store de-identified data for quality and research purposes.

What does “raw sequencing data” mean for you?

Beyond your clinical report, your test may generate large technical files (FASTQ, BAM, VCF) containing the underlying genetic information used to create your results. These files are usually stored by the laboratory that performed your sequencing.

Accessing your raw sequencing data

Your interpreted clinical report is always available through Eugene.
Raw sequencing data, being the unprocessed output straight from the sequencing machine used, is stored by the laboratory (e.g., Fulgent USA or Fulgent AU) in secure, encrypted systems. Eugene does not store your raw sequencing data.
Depending on the test type, you may be able to request access to your raw sequencing data from our partner laboratories.
For the Core and Couples Carrier Screening tests, your raw sequencing data is not available to you or to Eugene.

How to request your raw sequencing data

Please contact the laboratory that performed your sequencing to request access to your raw sequencing data. Because raw data storage is managed by the laboratory, there may be situations where raw data cannot be released.

Contact details for our partner laboratories are provided below.

If you would like Eugene’s assistance with this process, please email privacy@eugenelabs.com with:

your full name and date of birth
which test you completed
approximate test date
whether the data is for you or your clinician.

We will:

Confirm your identity
Contact the relevant laboratory
Provide you with required forms, fees and expected timeframes

What does “research use” mean for you?

Sometimes de-identified genetic or demographic information is used to help improve healthcare, validate testing, or contribute to medical discovery. This is always optional, controlled and transparent.

How research use works at Eugene

Your data may be used for research only if:

you have given explicit consent, or
the information is de-identified so you cannot be identified.

We may share de-identified, aggregated data with research partners such as universities or regulatory bodies. This applies to both Australian and overseas customers, and all partners must follow privacy protections that meet Australian privacy law requirements. Please refer to our Privacy Policy.

How to opt out

You can opt out of research at any time:

📧 Email privacy@eugenelabs.com

Opting out will not affect your access to testing or counselling.

How research works at International Laboratories

Eugene automatically opts out of your data being used for research purposes with our international laboratory provider Fulgent USA.

What does “data deletion” mean for you?

You have the right to request deletion or de-identification of your personal data which we hold. However, because we are a health service provider, some records must be retained for minimum periods to meet our legal obligations. For example, under the Health Records Act 2001 (Vic) we are required to retain your health information (which includes your test result and order form, and your personal information collected in providing health service to you) for a minimum prescribed retention period, which for adults is usually 7 years from the date of last service.

How to request deletion or de-identification of data stored by Eugene

Email privacy@eugenelabs.com and include:

your full name and date of birth
which tests you completed
whether you request deletion, de-identification or restriction of use

We will acknowledge your request within 7 business days.

You will always receive a clear explanation.

Timeframes

We will respond to your request usually within 30 days, and no longer than 45 days after your request, depending on complexity.

What if my test was processed in Australia?

For tests processed by one of our accredited Australian partner labs, they will collect and handle your data as follows:

Australian privacy and health record laws apply
Samples are generally kept as long as required for testing and quality assurance
Data is encrypted and access controlled
De-identified data may be used for internal research and development purposes unless you opt out
Pathology reports may be stored indefinitely as required by regulation

Any test-specific differences appear in your consent documents, or you can ask us directly at privacy@eugenelabs.com.

For Comprehensive Carrier Screening, Cancer Risk, Heart Health Tests and Preventative Bundle - lab report issued by Fulgent Genetics:

Partner Lab: Fulgent Genetics USA
Fulgent Genetics’ Privacy Policy

To request the deletion of your data complete their Privacy Web Form or emailprivacy@fulgentgenetics.com - include your first name, last name, DOB and name of the test (you can find this in your Fulgent report provided to you by Eugene).

For Couples Carrier Screening Tests:

To request the deletion of your personal data, contact support@lumihealth.com.auinclude your first name, last name, DOB and name of the test (you can find this in your VCGS report provided to you by Eugene).

For Core Carrier Screening Tests:

Email us at privacy@eugenelabs.com first to confirm which partner lab you are to contact:

Partner lab: Lumi Health Australia
Lumi Health’s Privacy Policy
Destruction of Data Policy for Lumi Health Customers
To request the deletion of your personal data, contact support@lumihealth.com.au - include your first name, last name, DOB and name of the test (you can find this in your VCGS report provided to you by Eugene).
Partner lab: VCGS
VCGS’ Privacy Policy

To request the deletion of your personal data, contactvcgs@vcgs.org.au- include your first name, last name, DOB and name of the test (you can find this in your VCGS report provided to you by Eugene).

For Expanded Carrier Screening, Cancer Risk, Heart Health Tests and Preventative Bundle - lab report issued by Invitae:

Partner Lab: Labcorp / Invitae
Labcorp / Invitae’s Privacy Policy

To request the deletion of your personal data complete their Patient Deletion of Identifiable Information Form. You can contact the lab at globalsupport@invitae.cominclude your first name, last name, DOB and name of the test (you can find this in your Invitae report provided to you by Eugene).

Summary of Your Rights and Protections:

Samples: Destroyed after required testing periods (generally within ~90 days, longer for some labs).

Data retention: Clinical records and other health information kept for at least 7 years; raw sequencing data stored by labs for 2–10 years depending on the lab and location.

Research: Only with your consent or in de-identified form. Opt out any time.

Raw sequencing data: May be available on request depending on the test and lab.

Deletion: Always available to request to Eugene, but records retention periods under law may need to be completed first (usually after 7 years from the date your results were released to you).

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