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Privacy policy

The Garvan Institute of Medical Research and the Garvan Research Foundation (Garvan) appreciates that privacy is important to you. Garvan is committed to handling personal information (including health and other sensitive information) in accordance with applicable privacy laws, including the Australian Privacy Principles set out in the Privacy Act 1988 (Cth)

How does Garvan collect and hold your personal information?

We usually collect your personal information directly from you when you have contact with us in person, over the phone or via email or the internet.

If we collect your personal information from a third party, we will take reasonable steps to contact you and notify you of the purposes for which we are collecting your personal information as well as advising you of other persons or other organisations to which we might give your personal information.

We hold personal information in paper-based and electronic records and systems.  Personal information may be collected in paper-based documents and converted to electronic form for storage (with the original paper-based documents either archived or securely destroyed). 

Garvan uses physical security and other measures to ensure that personal information is protected from misuse, interference and loss; and from unauthorised access, modification and disclosure.  Personal information held in paper-based form is generally securely stored at Garvan in Sydney or in the case of archived records, at an external storage facility in Australia.  

We maintain computer and network security by using firewalls, user identifiers and passwords to control access to our computer system.  Donations and registrations made on the Garvan website use encryption methods and credit card data is stored using systems compliant with the Payment Card Industry Data Security Standard.

How does Garvan disclose your personal information?

Where necessary, we may disclose your personal details to external contractors (such as organisations who assist with our research and educational activities, our mail-outs and independent IT service providers).

Occasionally we may share the contact details of our financial supporters with other like-minded charities to enable them to contact you with fundraising materials. When we collect your information we ask if you would like to opt-out of us sharing your details in this way.  If you decide you do not wish us to share your contact details in this way you can also contact us by using the details provided in the “How to contact us” section below. 

We only disclose your personal information to charities and our contracted service providers on condition that they must protect this information in accordance with Garvan’s Privacy Policy and Australian privacy laws.

We may also disclose your personal information to third parties where you have consented or we are entitled or required to do so by law.

Will your personal information be sent overseas?

Garvan does not disclose your personal information to overseas recipients.  We do however store some personal information on servers owned by companies based in the United States of America. Our contractual arrangements comply with the requirements of the Privacy Act and we take reasonable steps to ensure those companies do not breach Australian privacy laws in relation to your personal information.  

How can you access or seek correction of your personal information?

You may request to access the personal information that we hold about you using the contact details provided in the "How to contact us" section below.  In limited circumstances, access to your personal information may be declined in accordance with privacy laws.  We will provide you with access, free of charge.

We endeavour to ensure that your personal information is accurate, complete and up-to-date whenever we use it.  You can assist us with this by letting us know if your details change or if you notice errors or discrepancies in information we hold about you.  If you consider any personal information we hold about you is not accurate, or is incomplete or out-of-date, you may request we amend our records.  Please note that it is generally not possible to make changes to clinical information, however, you may be entitled to request that we associate a statement with your record.

What should you do if you have a complaint about the handling of your personal information?

If you have any questions or concerns about this Privacy Policy or how your personal information has been handled by Garvan, please contact us using the details in the "How to contact us" section below or via email at privacy@garvan.org.au.

We will consider and respond to your complaint within a reasonable period.  If you are not satisfied with our response, or your consider that we may have breached the Australian Privacy Principles or the Privacy Act, you are entitled to make a complaint to the Office of the Australian Information Commissioner.  The Office of the Australia Privacy Commissioner can be contacted by telephone on 1300 363 992 or full contact details can be found online at www.oaic.gov.au. 


In this policy

  • We collect personal information reasonably necessary for one or more of our functions or activities as medical research organisation.  The types of personal information we generally collect includes your name, date of birth, address and other contact details such as your telephone numbers and email address.  Depending upon the purpose of our interaction with you, we may collect additional personal information.  More detail about the personal information (including sensitive information) we collect and why is set out below.

  • When you make a donation, register for an event or make inquiries about our activities, we may collect your personal information including your research areas of interest and event attendance, your donation history and payment information including your credit card details. 

    We collect this information to process your payments, send you receipts as well as surveys, newsletters and information about research, education and fundraising events and activities. We may use your information to contact you to seek financial support for medical research conducted at Garvan. Typically, Garvan sends two to three appeal letters a year as well as three issues of our newsletter, BreakthroughYou may choose what you receive at any time.  If you do not wish us to use your personal information for any of the above purposes please contact us using the details in the 

     section below.

  • If you participate in the research and clinical trial activities and programs that Garvan conducts, we collect personal information to record your involvement and to process the results of research and clinical trials and to contact you regarding participation in future studies.  The information we collect from you will generally be sensitive information because it will be your health information and could be other sensitive information such as information about your racial or ethnic origin 

    We may collect your personal information including:

    • your medical history including, where relevant, a family medical history;
    • your Medicare number and information about your privacy health insurance;
    • current medications or treatments used by you;
    • the name of any care provider, health service provider or medical specialist to whom we refer you back to or has referred you to us, copies of any referrals and reports;
    • test results and samples.

    Information may also be collected about individuals who are not research participants when Garvan makes a record about a research participant.  For example, when collecting emergency contact details or a family medical history.

    From time to time we may collate and analyse statistical data from information we have previously collected.  In these cases, the data will be de-identified and aggregated before it is disclosed to third parties.

    As a medical research organisation, Garvan also operates biobanks which store biological samples and associated health data for use in research. Third party research organisations may provide Garvan with samples and data from participants in their research studies, for inclusion in a biobank. We may use these samples and data to generate genetic or genomic information.  Biobanks are a valuable resource to support research to develop new treatments, drugs and therapies and to understand health and disease conditions more broadly.  We work with reputable contractors and third party service providers to operate our biobanks.  Our biobanks are designed and managed to protect the privacy of individuals and to comply with the highest standard of legal requirements and clinical ethics.  In most cases, the biological samples and associated data are de-identified and it is not possible to identify individuals to whom the sample and associated data relates.  Where this is the case, the samples and data will not be personal information which is subject to privacy laws.  Where Garvan does hold personal information in a biobank, it will be handled in accordance with this privacy policy.

    All research and clinical trials undertaken at Garvan are approved by an external Human Research Ethics Committee.  Research participants enrolled in trials or research will be given further information detailing how their personal information (including health information) will be handled by Garvan.

  • Garvan may collect personal information about individual health practitioners who interact with Garvan such as referring doctors or other health professionals involved in the care of our research participants.  This is typically information such as your name, contact details, professional details and information regarding interactions or transactions with Garvan.  This information is collected for the purpose of administration, management and operation of Garvan.

  • We may collect personal information when we are canvassing recruitment of staff and PhD students.  Generally speaking, we will collect personal information that you supply to us as part of this process for the purpose of assessing applications and proposals.  Garvan will collect personal information about you such as your educational/academic history and work history.  We will collect personal information about you from third parties, such as your referees, as part of our assessment of your suitability for a position. 

    This Privacy Policy does not apply to employee records held by Garvan relating to an employee or former employee of Garvan.

  • Garvan may collect personal information about individuals who we deal with on a commercial basis such as suppliers, contractors and individuals in organisations to which we provide goods and services or from which we acquire goods and services.  We may collect personal information about you including your name, position, contact details, licence or registration numbers, ABN, bank details and other information relevant to the capacity in which you are dealing with Garvan.

  • We make use of "cookies", "pixel tags" and similar technologies on both  garvan.org.au and other Garvan websites ("Websites"). The use of cookies on our Websites allows us to track usage patterns and to compile data in an aggregated and “non-user” specific form enabling us to improve our website for future visitors. If you elect to become an online community user (for instance through signing up for our e-news or by creating an online fundraising page) cookies are used to remember you and to track your usage of our website. If you do not want information collected through the use of cookies, there is a simple procedure in most browsers that allows you to deny or accept the cookie feature.

    The use of pixel tags on our Websites allows us to track traffic patterns on the Websites. They may also be used to determine the habits of our email recipients. For instance, if you sign up for our e-news, pixel tags may be used to determine whether those emails are viewed and what content in those emails is viewed. This information may be linked to your IP address.

    The information obtained by us through the use of cookies, pixel tags and similar technologies may be used for marketing purposes in accordance with this privacy policy.

  • Where lawful and practical, you will be given the option to deal with us without identifying yourself, or by using a pseudonym (eg when inquiring about the activities that Garvan undertakes). It may not always be practicable or lawful for Garvan to deal with you anonymously or pseudonymously on an ongoing basis.  If we do not collect personal information about you, you may be unable to participate in or have access to our research programs, events or activities.  You also should be aware that contact details are required in order for Garvan to issue a tax-deductible receipt and to register you for events or tours. 

    We try to recognise the contributions of our supporters in the presentation of research by our scientists, in the Garvan Annual Report and on our Honour Board. However if you wish to remain anonymous, please contact us using the details provided in the “How to contact us” section below and we shall respect your wishes.

  • We usually collect your personal information directly from you when you have contact with us in person, over the phone or via email or the internet.

    If we collect your personal information from a third party, we will take reasonable steps to contact you and notify you of the purposes for which we are collecting your personal information as well as advising you of other persons or other organisations to which we might give your personal information.

    We hold personal information in paper-based and electronic records and systems.  Personal information may be collected in paper-based documents and converted to electronic form for storage (with the original paper-based documents either archived or securely destroyed). 

    Garvan uses physical security and other measures to ensure that personal information is protected from misuse, interference and loss; and from unauthorised access, modification and disclosure.  Personal information held in paper-based form is generally securely stored at Garvan in Sydney or in the case of archived records, at an external storage facility in Australia.   

    We maintain computer and network security by using firewalls, user identifiers and passwords to control access to our computer system.  Donations and registrations made on the Garvan website use encryption methods and credit card data is stored using systems compliant with the Payment Card Industry Data Security Standard.

  • Where necessary, we may disclose your personal details to external contractors (such as organisations who assist with our research and educational activities, our mail-outs and independent IT service providers).

    Occasionally we may share the contact details of our financial supporters with other like-minded charities to enable them to contact you with fundraising materials. When we collect your information we ask if you would like to opt-out of us sharing your details in this way.  If you decide you do not wish us to share your contact details in this way you can also contact us by using the details provided in the “How to contact us” section below. 

    We only disclose your personal information to charities and our contracted service providers on condition that they must protect this information in accordance with Garvan’s Privacy Policy and Australian privacy laws.

    We may also disclose your personal information to third parties where you have consented or we are entitled or required to do so by law.

  • Garvan does not disclose your personal information to overseas recipients.  We do however store some personal information on servers owned by companies based in the United States of America. Our contractual arrangements comply with the requirements of the Privacy Act and we take reasonable steps to ensure those companies do not breach Australian privacy laws in relation to your personal information.  

  • You may request to access the personal information that we hold about you using the contact details provided in the "How to contact us" section below.  In limited circumstances, access to your personal information may be declined in accordance with privacy laws.  We will provide you with access, free of charge.

    We endeavour to ensure that your personal information is accurate, complete and up-to-date whenever we use it.  You can assist us with this by letting us know if your details change or if you notice errors or discrepancies in information we hold about you.  If you consider any personal information we hold about you is not accurate, or is incomplete or out-of-date, you may request we amend our records.  Please note that it is generally not possible to make changes to clinical information, however, you may be entitled to request that we associate a statement with your record.

  • If you have any questions or concerns about this Privacy Policy or how your personal information has been handled by Garvan, please contact us using the details in the "How to contact us" section below or via email at privacy@garvan.org.au.

    We will consider and respond to your complaint within a reasonable period.  If you are not satisfied with our response, or your consider that we may have breached the Australian Privacy Principles or the Privacy Act, you are entitled to make a complaint to the Office of the Australian Information Commissioner.  The Office of the Australia Privacy Commissioner can be contacted by telephone on 1300 363 992 or full contact details can be found online at www.oaic.gov.au. 

How to contact us

Write to us

Privacy Officer - Garvan, 384 Victoria Street, Darlinghurst, NSW 2010

How are changes to this privacy policy made?

Garvan may amend this Privacy Policy from time to time, with or without notice to you.  We recommend that you visit this page to keep up to date with any changes.