Privacy policy

Our privacy commitment

Protecting your privacy is important to us. This policy explains how the Telethon Kids Institute collects, uses, and safeguards the personal information you provide to us. This policy may be amended from time to time.

The Telethon Kids Institute (the Institute) is bound by the Privacy Act 1988 (Cth), including the Australian Privacy Principals. The Institute is committed to protecting personal information we hold on individuals.

This document explains the types of personal information that we collect and use for the purpose of improving the health of individuals and populations. It also provides some detail about your privacy rights along with our general rights and obligations.

What is personal information?

Personal information means information or an opinion about an identified individual, or an individual who is reasonably identifiable:


  • Whether the information or opinion is true or not; and
  • Whether the information or opinion is recorded in a material form or not.

The types of personal information we collect may include your name, date of birth, gender, contact information and credit/debit card information.

Whose personal information do we collect?

We collect personal information from people who are connected to our operations and activities - including employees, donors and volunteers.

How do we collect your personal information?

At times we may request that you voluntarily supply us with personal information, such as your e-mail address and postal address, for purposes such as corresponding with us, making a donation, or participating in an online survey. This information will not be provided to other parties, unless we are required to do so by law, or as otherwise set out in this privacy statement.

Why do we collect your personal information?

We may collect your personal information for a number of purposes, including:


  • Marketing: to communicate with you about donations, campaigns, causes and events
  • Donors and supporters: to enable us to send you tax deductible receipts, newsletters, invitations and other Institute information
  • Research: to conduct and/or fund child health research
  • Volunteering and other support: to enable you to assist us with volunteering, community fundraising, advocacy and other activities where we seek the community's assistance
  • Other issues: communicating with you in relation to our operations, activities and objectives, to verify your identity and to comply with relevant laws.

Where we collect your personal information for a specific purpose not outlined above, we will provide you with a collection notice which explains the primary purpose and any related secondary purposes for which we are collecting your personal information.

What happens if you don't provide all this information?

If you do not provide some or all of the personal information requested, we may not be able to offer you a receipt for a donation or provide you with information about our causes, events, programs and projects.

Using a pseudonym or engaging with us anonymously

Where practicable, you will be given the opportunity to engage with us on an anonymous basis, or using a pseudonym.

Website usage information and cookies

When you browse the Institute's web site, you do so anonymously. We don't collect personal information - including your e-mail address. We do log your IP address (the Internet address of your computer) to give us an idea of which parts of our web site you visit and how long you spend there. But we do not link your IP address to anything personally identifiable.

The only other information automatically provided to us is the type of computer and operating system you are using. Your browser supplies us with this information.

Like many other web sites, the Institute web site may use a standard technology called a 'cookie' to collect information about how you use the site. Any 'cookies' cannot be used to personally identify you.

Opting out of direct marketing communications

Where we use your personal information to send you marketing and promotional information by post, email or telephone, we will provide you with an opportunity to opt-out of receiving such information. By electing not to opt-out, we will assume we have your implied consent to receive similar information and communications in the future. We will always ensure that our opt-out notices are clear, conspicuous and easy to take up.

If you do not wish to receive direct marketing communications from us, please contact our Head of Development, PO Box 855, West Perth, WA, 6872 or call us on 08 9489 7777.

To whom do we disclose your personal information?

We do not share your information with any third parties unless we have your specific consent to do so and we do not sell or share mailing lists.

Where is your personal information stored?

We take all reasonable steps to protect all of the personal information we hold from misuse, interference and loss, and from unauthorised access, modification or disclosure. Personal information that comes into our possession is stored securely in these ways:


  • Paper records are always stored in locked filing cabinets in secure areas within the Institute, and only authorised personnel have access
  • Electronic data is stored on a secure network within the Institute. All data is password protected and only authorised personnel have access.

Where personal information is stored with a third party, we have arrangements which require those third parties to maintain the security of the information. We take reasonable steps to protect the privacy and security of that information, but we are not liable for any unauthorised access or use of that information.

Your personal information will stay on the database indefinitely until you advise you would like it removed, unless we de-identify it or destroy it earlier in accordance with privacy law requirements.

Your direct debit or credit cards

We use Secure Socket Layer (SSL) certificates which is the industry standard for encrypting your credit card and debit card numbers, your name and address so that it cannot be viewed by any third party over the internet. Your financial information is encrypted on our servers and access to this information is restricted to our authorised staff only. The company we use is Tier 1 PCI compliant and all information is stored only in Australia. No information is sent overseas.

Research project information

All research projects undertaken by the Institute have been submitted to and approved by one or more Western Australian ethics committee/s. Research projects then obtain your consent to supply us with any personal information. We may gather from you personal information such as your name and contact details as well as detailed health information.

How does the Institute use this research project information?

We use your personal information to:

  • Process research project results looking for the causes or ways of preventing particular childhood conditions
  • Process results of clinical trials related to treatments for particular childhood diseases
  • Perform medical research and statistical analyses into the general health of populations to inform health providers and assist in government policy planning.

Information that you give us

The information you provide to us is provided on a voluntary basis. If you choose not to provide us with full contact details, then you may not be contacted with updates on your research study.

When we receive completed questionnaires or other information from you, your name is removed and replaced by a study identity number. This information is usually entered into a computer data file using the identity number. We file the paper records by identity number and store these in locked cabinets. The computerised information is also stored on a secure network with only authorised project personnel having access.

Physical examination information and samples

The Institute may also collect results of physical examination and samples for some projects. Samples are stored until the laboratory examination can take place under their study identity number. Results of the examination/s are recorded against the given number, not your name.

Access to your personal information

We will, upon your request, and subject to applicable privacy laws, provide you with access to your personal information that is held by us. However, we request that you identify, as clearly as possible, the type(s) of information requested. We will deal with your request to provide access to your personal information within 30 days.

Your rights to access personal information are not absolute and privacy laws dictate that we are not required to grant access in certain circumstances such as where:


  • Access would pose a serious threat to the life, safety or health of any individual or to public health or public safety
  • Access would have an unreasonable impact on the privacy of other individuals
  • The request is frivolous or vexatious
  • Denying access is required or authorised by a law or a court or tribunal order
  • Access would be unlawful, or
  • Access may prejudice commercial negotiations, legal proceedings, enforcement activities or appropriate action being taken in respect of a suspected unlawful activity or serious misconduct.

If we refuse to grant you access to your personal information, we will provide you with reasons for that decision (unless it is unreasonable to do so) and the avenues available for you to complain about the refusal.

Due to the potentially sensitive nature of some of the information we hold, we require photo identification of the applicant. Any applicant requesting information other than their own must also provide proof of their relationship to the child or dependent.

Updating your personal information

You may ask us to update, correct or delete the personal information we hold about you at any time. We will take reasonable steps to verify your identity before granting access or making any corrections to or deletion of your information.

We also have obligations to take reasonable steps to correct personal information we hold when we are satisfied that it is inaccurate, out of date, incomplete, irrelevant or misleading for the purpose for which it is held.

If you require access to, or wish to update your personal information, please contact us at Telethon Kids Institute, PO Box 855, West Perth, WA, 6872 or call us on 08 9489 7777.


If you have a complaint about the way in which the Telethon Kids Institute has handled your personal information, please contact us in writing at the address below. We will respond to your query or concern as soon as we can (within 30 days) and try and resolve your complaint promptly.

Reception, Telethon Kids Institute
100 Roberts Road, Subiaco, WA, 6008
PO Box 855, West Perth, WA, 6872
Telephone: (08) 9489 7777
Facsimile: (08) 9489 7700

If you are not satisfied with our response, your complaint may be taken to the Office of the Australian Information Commissioner.

For general enquiries whom do I contact?

If you have any further questions about our Privacy Policy or have a general enquiry please call us on the phone number above between the hours of 8.30am and 5.00pm, Monday to Friday.

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