Privacy Policy


In this privacy policy, “we”, “us” and “our” refers to The Brain Cancer Group, ACN 094 873 211, North Shore Private Hospital, Westbourne Street, St Leonards NSW 2065, Australia.


1. Your privacy is important to us

This privacy policy explains how The Brain Cancer Group collects, uses and manages personal information relating to individuals with whom we interact and engage.  This privacy policy has been developed in accordance with the Privacy Act 1988 (Cth) (Privacy Act) including the Australian Privacy Principles contained in the Privacy Act.

The term “personal information” means any information about an identified individual, or an individual who is reasonably identifiable, whether the information is true or not and whether the information is recorded in a material form or not.

Some personal information is also “sensitive information”.  Sensitive information includes health information (including genetic information or biometric information), information about a person’s racial or ethnic origin, political opinions, religion, trade union or other professional or trade association membership, sexual orientation/practices, and criminal record.


2. What kind of personal information do we collect and hold?

Depending on the nature of your interaction with us, we may collect the following types of personal information about you (whether in hard copy or electronic form:

  • name;
  • contact details including address, email address and telephone number(s);
  • date of birth;
  • occupation or job title;
  • health and medical history and information (including biosamples);
  • if you identify as a First Nations person or of another racial or ethnic origin;
  • information about your family members, family history (where reasonably necessary);
  • other information about you that is relevant to the research, education and/or support services we undertake with your involvement or provide to you;
  • your bank account or credit card details if you are making a donation or payment;
  • images or photographs of you at fundraising or other events we run;
  • if you volunteer to fundraise for us, details of the fundraising you intend to undertake and details about your insurance (if relevant);
  • information collected through the use of cookies on our website and other tracking technology used on our social media accounts;
  • if you are a job or volunteer applicant or a prospective employee or volunteer, information about your qualifications, work experience and any other information you include in your application or we collect from your referee.


3. How and when do we collect personal information?

We endeavour to collect your personal information directly from you unless you consent to us collecting it from someone else (such as a medical practitioner or a family member), or where it is unreasonable or impracticable to collect it directly from you, or as otherwise permitted by law.

We may collect personal information from you in a number of ways, including:

  • when you enage with us over the phone, via email or in person;
  • when you complete documentation, either in hard copy or electronically, such as via a form including via the website;
  • when you participate in research, education or other activities with us;
  • when you request and receive support and similar services from us;
  • when you make a donation or other payment to us;
  • when you apply for a position with us either as an employee, volunteer or contractor;
  • through your access to and use of our website (including through the placement of cookies discussed below).


4. Cookies and other analytical tools

We use “cookies” (small text files sent to and stored by your browser on your device) to collect information and support certain features of our website, and other web tracking/analytic tools that generate statistics about traffic to our website.

For example, we may use these technologies to:

  • collect information about the ways you use the website – which pages you visit, which links you use, and how long you stay on each page;
  • recognise when you return to the website; and
  • improve our services, programs, content and resources.

Cookies can collect information such as your internet protocol (IP) address, the URLs of websites you have visited before or after accessing our website.  Generally, however, the information we collect using these web technologies does not identify you personally. 

If you do not wish to receive cookies, you can set your browser so that your computer does not accept them. 

Our website also uses marketing automation tools that send communications (such as email or SMS) using a number of different services.  Each service uses tracking technologies primarily to understand what subjects are interesting to you by monitoring whether you open emails and follow links. This information is used to improve the communications that are sent to you and to improve the services, content and resources that are offered to you.


5. How do we use personal information?

We may use your personal information (including sensitive information) for one or more of the following purposes :


  • to provide services to you;
  • to verify your identity, respond to your requests or as otherwise directed by you;
  • to provide you with news, information and material (including marketing material) in relation to our research, education and support activities, and how we have applied donations and funds raised through our fundraising activities;
  • to promote our programs and activities, including research, education and support services, and our fundraising initiatives;
  • to undertake health and medical research as consented to by you, including research in relation to brain cancer and other research programs we determine from time to time, including with research partners;
  • to undertake general research or other reasonable research related activities, including via surveys;
  • to update our records and keep your contact details up to date;
  • to process and respond to any request or complaint made by you;
  • to process donations and payments, provide receipts and ship any items you purchase from us to you;
  • to enhance your experience of our website and social media pages;
  • for the administrative, employment, planning, service development, quality control and research purposes of The Brain Cancer Group;
  • to consider and asses your application for employment, volunteering or contract engagement with us;
  • to comply with any law, regulation, determination, decision, direction or request of a regulator or government authority;
  • for any other purposes that we notify you of, or that you consent to; and
  • otherwise as permitted by law.


We will not use your personal information in a manner or for a purpose that is unrelated to or inconsistent with the purpose of its original collection, unless you have consented to that other use (other than as we are authorised or required to do so by law).


You can opt out of receiving communications from us about news, marketing and fundraising, at any time by contacting us at:

The Brain Cancer Group

Phone: (02) 8425 3369



You can also opt out of our electronic communications about news, marketing and fundraising, by using the unsubscribe function provided in those communications.


Please note that this does not apply and you cannot opt out of receiving contractual notices such as changes to our terms and conditions for the provision of services or other similar information.


6. Who might we disclose personal information to?

Connected with the purposes set out in section 5 above, we may disclose your personal information (including your health and other sensitive information) to:


  • our management and staff, including our paid employees, volunteers and contractors;
  • our partners, affiliates, research collaborators, contractors and consultants;
  • any organisation or any authorised person with your prior consent;
  • a person or organisation to whom we are required by law, or otherwise permitted by law, to provide your personal information;
  • your organisation, if you are acting on behalf of an organisation;
  • our business partners and sponsors who assist with our fundraising and events;
  • for our fundraising events, to event partners, venues and catering teams;
  • our professional advisers, including those that provide legal, taxation and audit services, where those advisers are bound by obligations of confidentiality;
  • our contracted service providers, where those service providers are bound by obligations of confidentiality and are only permitted to use the information to provide services to us or on our behalf; and
  • where you are a job or volunteer applicant, to your nominated referees for the purpose of receiving a reference;
  • others in accordance with a request made by you.

Where we disclose your personal information to a third party, we will take steps that are reasonable in the circumstances to ensure that your information is protected and is handled by that third party in accordance with applicable privacy laws.

If we refer you to a third party service provider, please note that service provider may also collect and hold your personal information. We make no representation or warranties in relation to the privacy practices of any such third party and we are not responsible for their collection, use or disclosure of your personal information. Third party service providers you engage with are responsible for informing you about their own privacy practices.


7. Do we disclose your personal information to anyone outside Australia?

Some of the third parties we disclose your personal information to are located outside Australia.  The countries where these third parties are located will depend on the circumstances.  However in the ordinary course of our business and operations, we commonly disclose personal information to our IT and other service provider which are based (and which host our data in) countries including USA.

We may also be required, from time to time, to disclose your personal information to our international partners and research affiliates and collaborators for the purposes described in section 5 of this privacy policy. The locations of these third parties include USA.

Where we disclose your personal information to a third party outside Australia, we will take such steps as are reasonable in the circumstances to ensure that your personal information is protected and is handled by that third party in accordance with applicable privacy laws.


8. How do we store and protect personal information?

We take reasonable steps to protect the personal information we hold from misuse, loss, unauthorised access, modification or disclosure.  These steps include locked storage of paper records and password protected access rights to computerised records, and otherwise taking steps to ensure that our systems, databases and facilities are secure, and our staff (including employees, volunteers and contractors) are bound by and comply with our policies and procedures regarding personal information and confidentiality, and by putting in place appropriate contractual terms with third parties.


9. Your rights to correct and access your personal information

We will take all reasonable steps to ensure that the personal information we collect, use or disclose is accurate, complete and up to date. To ensure your personal information is accurate, please notify us of any errors or changes to your personal information and we will take appropriate steps to update or correct such information in our possession.


You may request access to the personal information we hold about you by contacting us at:


The Brain Cancer Group

Phone: (02) 8425 3369



We may require you to verify your identity and specify what information you require. We may charge a fee to cover the cost of verifying your application and locating, retrieving, reviewing and copying any material requested. If the information sought is extensive, we will advise the likely cost in advance.


There will be occasions we cannot grant you access to the personal information we hold. Such occasions include where release of the information would have an unreasonable impact on the privacy of others, or where the release may result in a breach by us of confidentiality or another legal obligation. If this occurs, we will give you reasons for any refusal of access.


10. Enquiries and complaints

If you would like further information about the way in which we manage the personal information we hold, or if you have any concerns about our collection, use or disclosure of personal information, or believe we have not complied with this privacy policy or the Privacy Act, please contact us at:


The Brain Cancer Group

Phone: (02) 8425 3369



Our team will investigate the complaint and determine whether a breach has occurred and what action, if any, to take.  We will take any privacy complaint seriously, and will aim to resolve any such complaint in a timely and efficient manner.  We expect that our procedures will deal fairly and promptly with your complaint.


However, if you remain dissatisfied, you can also make a formal complaint with the Office of the Australian Information Commissioner (OAIC):


Phone: 1300 363 992
Mail: Director of Compliance
Office of the Australian Information Commissioner
GPO Box 5218
Sydney NSW 2001


11. Changes to this privacy policy

We may, from time to time, review and update this privacy policy to take account of new laws and technology, changes to our operations and practices and to make sure it remains appropriate to the changing environment.  Any revision to this privacy policy will be published on our website.  The revised version will take effect immediately on publication.

Updated December 2023