Protecting your privacy is important to us. We hope the following statement will help you understand how the Telethon Institute for Child Health Research collects, uses, and safeguards the personal information you provide on our web site.
Privacy Statement of the Telethon Institute for Child Health Research
The Telethon Institute for Child Health Research (the Institute) is bound by the Privacy Act 1988 (Cth) ("the Act"), including the National Privacy Principles. 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 personal information does the Institute gather?
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.
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.
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.
We gather information from donors and supporters to enable us to send you tax deductible receipts, newsletters, invitations and other Institute information. The information we have is information that you have provided to us, such as your name, address, telephone number, email address and payment details. We also keep information about your donation history such as the amount you donated, the date it was received, your payment method and your receipt number. This information is stored in a Donor Management database accessible only by authorised staff. The information we have about our donors and supporters is used only for fundraising purposes and to keep you informed about what is happening at the Institute. Donor/supporter information is not passed on to any other party, unless we are required to do so by law.
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
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.
Does the Institute share the information we receive?
- The Institute does not sell/share mailing lists
- With your consent we sometimes pass on information to researchers at other institutions such as the University of Western Australia, Curtin University of Technology, the Department of Health of Western Australia, King Edward Memorial Hospital and Princess Margaret Hospital for Children.
- Within Australia, personal information is disclosed to a third party only when individual consent is given; when required or authorised by law; or when necessary to prevent or lessen a serious or imminent threat to someone's life, health or safety
How secure is information about me?
Data that is transmitted over the Internet cannot be guaranteed as completely secure. But we take reasonable steps to protect your personal information once it comes into our possession:
- 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.
What information can I access?
You can request access to the personal information that we hold about you. If you believe that any information is incorrect you may ask us to correct it. There is no fee for requesting access to your information, however we may charge you a reasonable cost for processing your request.
Access to some of your personal information may be denied under the provisions of the Privacy Act, if access will for example:
- Pose a threat to the life or health of anyone
- Have an unreasonable impact on other people's privacy
- Be unlawful
- Be related to existing or anticipated legal proceedings
How do I access my information?
You can request access to your personal information by contacting the reception staff at the Institute. Our address and contact details are:
Reception, Telethon Institute for Child Health Research
100 Roberts Road, Subiaco, WA 6008
PO Box 855, West Perth WA 6872
Telephone (08) 9489 7777
Facsimile (08) 9489 7700
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.
Our reception staff will supply you with the necessary Request for Information form for completion. Alternatively, you may download the form from our website. Upon submission of the completed form, an appointment will then be arranged between yourself and our Privacy Officer to discuss your access request.
For general enquiries whom do I contact?
If you have any further questions about this Privacy Statement 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.