PRIVACY POLICY « Charlie Teo Foundation

PRIVACY POLICY

This Privacy Policy sets out our commitment to protecting the privacy of your personal information in accordance with the Privacy Act 1988 (Cth) and the Australian Privacy Principles. Charlie Teo Foundation ABN 57 622 041 061 only collects personal information that is reasonably necessary for us to perform our charitable activities.

What is personal information?

Personal information is information or an opinion about an identified individual, or an individual that is reasonably identifiable. Personal information can include a person’s name, address, contact details, date of birth, gender, sexuality and race.

What personal information does Charlie Teo Foundation collect and why?

To enable us to undertake our charitable activities we may collect the following personal information from you:

• Your name, title, signature, address, phone number, email, date of birth and employment details;

• Health information;

• Payment and billing details including bank and credit card details.

If you are making a donation, we may also ask you to provide details about the motivation for the gift and whether it is made on behalf of an individual or an organisation.

Who do we collect personal information from?

Charlie Teo Foundation may collect personal information from donors, volunteers, fundraisers, people with or affected by brain cancer, event guests, corporate partners and sponsors,researchers and research institutions, grantees, suppliers, service providers and other supporters.

How do we collect your personal information?

We may collect personal informationfrom you in various ways, including in-person, by telephone, via our website or email, the internet, through social media or by mail.

Third parties might also collect personal information from you (for example, organisers of fundraisers) to provide to us.

What do we do with your personal information?

Charlie Teo Foundation uses personal information in the following ways:

• To communicate with you about our activities including but not limited to upcoming fundraising events, campaigns, research activities and outcomes;

• To process your donation or application to organise a fundraiser;

• To enable us to undertake our volunteer program;

• For marketing and promotion of our activities including to help raise awareness and funds for brain cancer research;

• To enable us to conduct our grant program and research activities; and

• To comply with legislative or regulatory requirements.

We would only provide your personal information to a third party if it is necessary to perform our activities (i.e.if you have specific dietary requirements, we would provide that information to the organiser of the event).

Health information and other sensitive information

If you provide us with details of how you have been affected by brain cancer, including information about your medical condition, history andtreatment, this is considered health information. We will always seek your consent to the use and disclosure of such information, including using your story and image in our communications, social media and promotional material.

Research participants

If you participate in research programs that we conduct, we may collect personal information to record your involvement and to process the results of research and to contact you regarding participation in the study or 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. It will be handled in accordance with this privacy policy and any relevant research ethics approved by an external committee.

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 we make 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.

Biobank

As a brain cancer research organisation, we operate a biobank which stores biological samples and associated health data for use in research. Third party research organisations may provide us 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 biobank is 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 we do hold personal information in the biobank, it will be handled in accordance with this privacy policy and the relevant human research ethics approved by an external Human Research Ethics Committee. Research participants enrolled in this research will be given further information detailing how their personal information (including health information) will be handled.

How do we store your personal information?

Your personal information is stored onelectronic cloud-based databases and Microsoft Office 365. We also may hold hard copy information on-site at our office. We have implemented electronic and physical measures to protect the personal, sensitive and health information we receive from misuse, interference and loss, and from unauthorised use, modification or disclosure. We are not, however, liable for any unauthorised access or disclosure of information.

Your financial information

Our website uses Secure Sockets Layer (SSL) certificates to protect your credit card information over the internet. We also encrypt the credit card details we store on our electronic cloud-based database.

Access to and correction of your personal information

At your request, Charlie Teo Foundation will provide you with access to your personal information that is held by us. We may, however, refuse a request for access in certain circumstances in accordance with Australian Privacy Principle 12.

If you consider the personal information that we hold about you is inaccurate, incomplete, irrelevant or out-of-date, please contact us so that we can correct the information.

Unsubscribe

To unsubscribe from our e-mail database or opt-out of communications (including marketing communications), please contact us using the details below or opt-out using the opt-out facilities provided in the communication.

How are changes to this privacy policy made?

We may, at any time and at our discretion, change this Privacy Policy by publishing the amended Privacy Policy on our website. We recommend you check our website regularly to ensure you are aware of our current Privacy Policy.

For any questions or notices, please contact our Privacy Officer at:

Charlie Teo Foundation ABN 57 622 041 061

Phone: (02) 8880 8328

Email: info@charlieteofoundation.org.au

We will respond to requests within a reasonable timeframe.

Last updated December 2019