Privacy Policy and Disclaimer

Privacy Policy

Your privacy is important

This statement outlines the Lynch Syndrome Australia’s policy on how Lynch Syndrome Australia uses and manages personal information provided to or collected by it.

Lynch Syndrome Australia is bound by the Australian Privacy Principles contained in the Commonwealth Privacy Act and is compliant with the Privacy Amendment (Enhancing Privacy Protection) Act 2012. In relation to health records, Lynch Syndrome Australia is also bound by the Victorian Health Privacy Principles which are contained in the Health Records Act 2001.

Lynch Syndrome Australia may, from time to time, review and update this Privacy Policy to take account of new laws and technology, changes to Lynch Syndrome Australia’s operations and practices and to make sure it remains appropriate to the changing legal environment.

What kind of personal information does Lynch Syndrome Australia collect and how does Lynch Syndrome Australia collect it?

The type of information Lynch Syndrome Australia collects and holds includes (but is not limited to) personal information, including sensitive information, about:

    • Personal information (including name, address, contact details)
    • Credit card details or alternative information where a donation or payment is being
      made or for transactional purposes
    • Where necessary for the particular purpose, personal stories and health information
      may also be collected.

Personal Information you provide:

Lynch Syndrome Australia will generally collect personal information held about an individual by way of phone calls, through social media, surveys and the website. You do have the right to seek to deal with us anonymously or using a pseudonym, but in almost every circumstance it will not be practicable for us to deal with you or provide any services to you except for the most general responses to general enquiries, unless you identify yourself.

Personal Information provided by other people:

In some circumstances Lynch Syndrome Australia may be provided with personal information about an individual from a third party, for example your family.

How will Lynch Syndrome Australia use the personal information you provide?

Lynch Syndrome Australia will use personal information it collects from you for the primary purpose of collection, and for such other secondary purposes that are related to the primary purpose of collection and reasonably expected, or to which you have consented.

In relation to direct marketing, Lynch Syndrome Australia will use your personal information for direct marketing where you have provided that information, and you are likely to expect direct marketing: only then you will be sent direct marketing containing an opt out. If we use your personal information obtained from elsewhere we will still send you direct marketing information where you have consented and which will also contain an opt out. We will always obtain your consent to use sensitive information as the basis for any of our direct marketing.


Lynch Syndrome Australia also obtains personal information about volunteers who assist Lynch Syndrome Australia in its functions or conduct associated activities to enable Lynch Syndrome Australia and the volunteers to work together.

Who might the Lynch Syndrome Australia disclose personal information to?

Lynch Syndrome Australia may disclose personal information, including sensitive information, held about an individual to:

  • government departments;
  • people providing services to the Lynch Syndrome Australia,
  • anyone you authorise the Lynch Syndrome Australia to disclose information to.

Sending information overseas:

Lynch Syndrome Australia will not send personal information about an individual outside Australia without:

  • obtaining the consent of the individual (in some cases this consent will be implied); or
  • otherwise complying with the Australian Privacy Principles or other applicable privacy legislation.

We may use overseas providers of IT services including servers and cloud services.

How does Lynch Syndrome Australia treat sensitive information?

In referring to ‘sensitive information’, Lynch Syndrome Australia means:

“information relating to a person’s racial ethnic origin, political opinions, religion, trade union or other professional or trade association membership, sexual preferences or criminal record, that is also personal information; and health information about an individual”.

Sensitive information will be used and disclosed only for the purpose for which it was provided or a directly related secondary purpose, unless you agree otherwise, or the use or disclosure of the sensitive information is allowed by law.

Management and security of personal information

Lynch Syndrome Australia’s Board and Volunteers are required to respect the confidentiality of personal information and the privacy of individuals. Lynch Syndrome Australia has in place steps to protect the personal information Lynch Syndrome Australia holds from misuse, loss, unauthorised access, modification, interference or disclosure by use of various methods including locked storage of hard copy records and secure computerised records.

We may also use web beacons, Flash local stored objects and JavaScript. If you adjust your browser settings to block, reject or delete these functions, the webpage may not function in an optimal manner. We may also collect information about your IP address, although this may not identify you.

Updating personal information

Lynch Syndrome Australia endeavours to ensure that the personal information it holds is accurate, complete and up-to-date. A person may seek to update their personal information held by Lynch Syndrome Australia by contacting Lynch Syndrome Australia at any time.

The Australian Privacy Principles and the Health Privacy Principles require Lynch Syndrome Australia not to store personal information longer than necessary. In particular, the Health Privacy Principles impose certain obligations about the length of time health records must be stored.

You have the right to check what personal information Lynch Syndrome Australia hold about you.

Under the Commonwealth Privacy Act and the Health Records Act, an individual has the right to obtain access to any personal information which Lynch Syndrome Australia holds about them and to advise Lynch Syndrome Australia of any perceived inaccuracy. There are some exceptions to this right set out in the applicable legislation. To make a request to access any information Lynch Syndrome Australia holds about you, please make the request in writing.

Lynch Syndrome Australia may require you to verify your identity and specify what information you require. Although no fee will be charged for accessing your personal information or making a correction, Lynch Syndrome Australia may charge a fee to retrieve and copy any material. If the information sought is extensive, Lynch Syndrome Australia will advise the likely cost in advance.

How long will Lynch Syndrome Australia keep my information?

Your personal information that is no longer required will be destroyed. In many circumstances, however it will be kept for marketing purposes, as you will have consented to that.

Enquiries and privacy complaints.

If you would like further information about the way Lynch Syndrome Australia manages the personal information it holds, please contact us. If you have any concerns, complaints or you think there has been a breach of privacy, then also please contact Lynch Syndrome Australia who will first deal with you usually over the phone. If you are not satisfied with our response to your complaint within 30 days from this meeting, then you can refer your complaint to the Office of the Australian Information Commissioner via:

  • email:
  • tel: 1300 363 992
  • fax: +61 2 9284 9666


“While information on our website or accessible via links from our website is subject to our quality assurances processes, the information is also subject to continuing research, clinical experience, reasonable differences in opinions among authorities, unique aspects of individual situations and the possibility of human error in preparing the information. No representation or warranty (express or implied) is made as to the currency, completeness, accuracy, reliability, suitability, and / or availability of the information. In addition, no representation or warranty (express or implied) is made that the information will meet your health or medical requirements.  You should seek medical advice tailored to your particular circumstances.”