Privacy policy

Last updated: May, 2023

Eugene's Privacy Policy

Eugene Labs (Eugene, we, our or us) is committed to protecting the privacy and rights of individuals in relation to their personal information. This document is Eugene’s Privacy Policy and applies in respect of the information collected and used by both Eugene and our partner laboratories. This policy has been developed in accordance with the Privacy Act 1988 (Cth) (Privacy Act). Eugene also complies with the Health Privacy Principles as set out in the Health Records Act 2001 (Vic) where applicable.

This Privacy Policy explains how Eugene handles personal information relating to individuals with whom Eugene interacts, including customers, medical professionals, consultants and contractors (referred to in this policy as you). This Privacy Policy does not apply to our handling of employee information.

1. Personal information and sensitive information

The expression "personal information" means information or an opinion about an identified individual, or an individual who is reasonably identifiable (directly or indirectly).  This may include your name, address, telephone number, email address, online identifier (such as an IP address) and your profession or occupation.

Some personal information is also “sensitive information.” Sensitive information has the meaning given by the Privacy Act. Sensitive information is information about your racial or ethnic origin, your political opinion, your political association, your religious beliefs/affiliations, your philosophical beliefs, whether you are a member of a trade or professional association or trade union, your sexual orientation/practices, your criminal record or your health information (including genetic information or biometric information).

“Health information” is a type of both personal and sensitive information. It includes information or an opinion about:

• a person's health, a person's wishes about the future provision of a health service, or a health service provided or to be provided to a person;
• other personal information collected to provide or in providing a health service to a person;
• other personal information collected in connection with a person's donation, or intended donation of body parts or substances, or organs; and
• genetic information about a person in a form that is, or could be, predictive of the health of the individual or a genetic relative of the individual.

For the purposes of this Privacy Policy, a reference to personal information should be read as including sensitive and health information, unless otherwise specified.

2. What personal information does Eugene collect and hold?

We only collect personal information if it is necessary for one or more of our functions or activities. We may collect the following types of personal information:

• name;
• date of birth;
• gender;
• mailing or street address;
• email address;
• telephone or facsimile number;
• occupation or job title;
• health and medical history or information 
• information about your dependents or your pregnancy (where reasonably necessary);
• bank account or credit card details if you are making a payment for our services; and
• photographs of you or your dependents that you share with Eugene or tag within public social media platforms.

Where the personal information is also sensitive information (including health information), we will only collect it with your prior consent.

Sometimes, we may receive personal information which we did not ask for (i.e. unsolicited information). If this occurs, within a reasonable period of time we will determine whether we could have collected the information by seeking it from you. If we determine that we could not have collected that information from you, we will destroy the information or de-identify it where it is lawful to do so.

We may also collect information from time to time that is not personal information because it does not identify you or any other individual. For example, we may collect anonymous answers to surveys or aggregated information about how people use our website and services.

3. How and when does Eugene collect personal information?

We collect your personal information directly from you unless it is unreasonable or impracticable to do so. If we collect your personal information from someone other than you, we will take reasonable steps to ensure that you are or have been made aware of what information has been collected, and the purpose of that collection. When collecting personal information from you, we may collect it in ways including:

• during conversations between you and our staff (which includes paid employees and volunteers);
• when you complete documentation;
• when you participate in the services we provide or other research activities; or
• through your access and use of our website.

4. For what purposes does Eugene collect, hold and use personal information?

We will only collect and/or use your personal information (including health information) to the extent that this is necessary for one or more of the following activities:

• to provide services to you;
• to verify your identity, respond to your requests or enquiries, or as otherwise directed by you;
• to provide you with news, information and material in relation to services provided by Eugene, if requested by you;
• to undertake medical research with your consent;
• to undertake general research activities, including surveys and polls and other reasonably related research activities;
• for Eugene’s administrative, employment, planning, service development, quality control and research purposes;
• to update our records and keep your contact details up to date;
• to process and respond to any complaint made by you;
• to comply with any law, rule, regulation, lawful and binding determination, decision or direction of a regulator, or in co-operation with any governmental authority in Australia;
• to promote programs and activities of Eugene, including fundraising, corporate philanthropy and education; and
• as otherwise as permitted by law.

We only collect such personal information that we need for these primary purposes or for other (secondary) purposes that are related to a primary purpose. If we hold personal information about you that was collected for a particular purpose (i.e. one of the purposes listed above, being the primary purpose), we will not use or disclose the information for another purpose (i.e. a secondary purpose) without your consent, unless you would reasonably expect us to use it for the secondary purpose, or it is required by law.

In relation to the use of your personal information to provide you with information about our programs and activities, you may at any time request us not to provide you with any direct marketing and fundraising communications or publications. We will provide you with a simple means to opt-out of receiving such correspondence from us.

You may elect to opt-out from receiving direct marketing information at any time, by contacting us at the contact details below or, in the case of electronic correspondence, by selecting any unsubscribe option.

In relation to sensitive information, we will not use or disclose this for the purpose of direct marketing unless you have expressly consented.

5. What happens if you do not provide us with the personal information we request?

You have the right to not identify yourself, including the right to not provide us with your personal information.

If you do not provide us with the personal information described above, we may not be able to provide the requested services to you, either to the same standard or at all, and we may not be able to provide you with information about services that you may want, including information about related services.

6.  How does Eugene securely hold your personal information?

We will take reasonable steps to protect all personal information which we hold from misuse or loss and from unauthorised access, modification or disclosure. We may hold your information in either electronic or hard copy form. Personal information is destroyed or de-identified by us when it is no longer needed for the primary purposes (or any related secondary purposes) set out in this Privacy Policy and the destruction is permitted by law.

Security risks are mitigated through Eugene’s commitment to de-identifying or destroying any personal information which is no longer required, where possible and permitted by law.

You should be aware when using our website that no data transmission over the Internet can be guaranteed as totally secure. Although we strive to protect such information, we do not warrant the security of any information that you transmit to us over the Internet (including through our website), and you do so at your own risk.

7. Who can Eugene disclose your personal information to?

We may provide your personal information (including your health information), to:

• our staff, which include our paid employees, volunteers and contractors;
• our professional advisors;
• our related bodies corporate, partners, affiliates, contractors and consultants who assist us in providing services to us and are required by us to protect your personal information;
• your care team – including doctors, allied-health professionals. These individuals will only be contacted if they referred you to Eugene or if you request your results to be shared with these individuals.
• if any of your family members contact Eugene wanting support around genetic screening, we will not disclose your results to them unless you provide written consent.
• any organisation for any authorised person with your express consent;
• a person or organisation to whom we are compelled by law, or otherwise permitted by law, to provide your information; or
• your organisation, if you are acting on behalf of an organisation.
• If we refer you to a third party service provider, that service provider may also collect and store your personal information with your consent. We make no representation or warranties in relation to the privacy practices of any third party service provider and we are not responsible for their collection, use or disclosure of your personal information. Third party service providers are responsible for informing you about their own privacy practices.

8. Does Eugene disclose personal information to anyone outside Australia?

We may be required, from time to time, to disclose your personal information to our partners and research affiliates for performance of the activities detailed in section 4 of this Privacy Policy. The locations of our partners and research affiliates are detailed at section 14 (end of this document). When you provide us with your personal information, you consent to such disclosure as reasonably necessary.

Notwithstanding this, we will take reasonable steps to ensure that the receiving person or organisation is subject to a law, binding scheme or binding contract that provides substantially similar protection to the Privacy Act which you can access and enforce.

We will also take reasonable steps to ensure that the overseas recipient protects your privacy in a manner consistent with this Privacy Policy and requirements of the Privacy Act. To the extent that it is reasonable and practical for us to do so, we will use reasonable endeavours to de-identify any personal information prior to overseas disclosure.

9. How can you access and correct your personal information?

You have a right to seek access to, and correction of the personal information we hold about you.

You may request access to any personal information we hold about you at any time by contacting Eugene. Where we hold information that you are entitled access to, we will take reasonable steps to provide you with suitable means of accessing it.

There may be instances where we cannot grant you access to the personal information we hold. For example, we may need to refuse access if granting access would interfere with the privacy of others or if it would result in a breach of confidentiality. If that happens, we will give you written reasons for any refusal.

We will take reasonable steps to ensure that any personal information that we have collected is accurate, up-to-date and complete. We will also take reasonable steps to ensure that any personal information we use or disclose is accurate, up-to-date, complete, and relevant having regard to the purpose of the use or disclosure.

If you believe that personal information we hold about you is incorrect, incomplete or inaccurate, then you may request us to amend it. We will consider whether the information requires amendment. If we agree, we will take reasonable steps to correct the information held. In some circumstances where we correct or update a record, we may still require retention of the original record. We then will provide reasons for our decision in writing and add a note to the personal information stating your requested amendment.

10. Third party websites

If we provide links through our website to third-party websites, plug-ins and applications, we are not responsible for the content, privacy policy and practices of the other organisation.  You should familiarise yourself with the privacy policies of any such third parties autonomously.

11. What is the process for complaining about a breach of privacy?

If you believe that your privacy has been breached, please contact the Eugene Team (see details in section 13 below) and provide details of the incident so that we can investigate it.

We require any complaint to be made in writing first. We will then endeavour to acknowledge receipt of your complaint within 7 business days. If we are unable to resolve your complaint to your satisfaction, a complaint can also be made to the Office of the Australian Information Commissioner.

12. Changes to this Privacy Policy

We reserve the right to change, modify or update this Privacy Policy from time to tim by publication of the revised version. Any revision to our Privacy Policy will be published on our website. The revised version shall take effect immediately upon publication.

13. Contacting us 

If you have an enquiries about: 

• this Privacy Policy, 
• would like to access or amend the personal information we hold about your or if you 
• Have a complaint regarding the treatment of your privacy 
• Have a complaint about the possible breach of your privacy, please contact us at: privacy@eugenelabs.com

We will treat your enquiry or complaint confidentially. One of our staff will contact you within a reasonable time after you have made contact with us to discuss your enquiry or complaint and outline options regarding how it may be dealt with. We will aim to ensure that any complaint is resolved in a timely and appropriate manner.

14. Locations of our partners and research affiliates

Our partners and research affiliates are located both in Australia and internationally. These currently include: 

• InvitaeCorporation, San Francisco, CA, 94103
• Invitae’s Privacy Policy can be accessed: here
  
  
• Victorian Clinical Genetics Service, Melbourne, Australia 
• VCGS is a subsidiary of Murdoch Children's Research Institute
• (MCRI) located at The Royal Children's Hospital (RCH) Melbourne.

MCRI’s Privacy Policy can be accessed:  here