Skip to main content


Version 2.0 November 2014

About this policy

Human Variome Project International Limited is subject to the laws governing privacy in Australia, including the Privacy Act 1988 (Cth). This privacy policy details how Human Variome Project International Limited handles personal information.


We collect, hold, use and disclose personal information to carry out the functions and activities of coordinating the Human Variome Project. These functions and activities include:

  • maintaining the register of members of the Human Variome Project Consortium
  • facilitating the organisation and running of events and conferences
  • producing and distributing educational and informative information about the Project and its activities
  • holding public consultations on draft HVP Standards and Guidelines

Collection of your personal information

At all times we try to only collect the information we need for the particular function or activity we are carrying out.

The main way we collect personal information about you is when you give it to us. For example, we collect personal information when you:

  • contact us to ask for information
  • apply to become a member of the Human Variome Project Consortium
  • register for an event that we are running or involved in
  • subscribe to an email or print distribution list.

We may also collect contact details and some other personal information if you join one of our committees, councils or Working Groups, or participate in a meeting or consultation with us.

Collecting Sensitive Information

We do not collect sensitive information as it is defined under the Privacy Act 1988 (Cth).


Where possible, we will allow you to interact with us anonymously or using a pseudonym. However, for most of our functions and activities we usually need your name and contact information to enable us to correctly handle your inquiry, registration or application.

Our website

Human Variome Project International Ltd. maintains the Human Variome Project website ( The information that we collect about you via this website is stored on servers located in the United States and managed according to this policy.

Website analytics and cookies

We use a range of tools provided by third parties (for example: Google) to collect or view website traffic information. These providers have their own privacy policies.

Our website uses cookies, as almost all websites do, to help provide you with the best experience we can. Cookies are small text files that are placed on your computer or mobile phone when you browse websites.

Our cookies help us:

  • Make our website work as you'd expect
  • Save you having to login every time you visit the site
  • Improve the speed/security of the site
  • Allow you to share pages with social networks like Facebook
  • Personalise our site to you to help you get what you need faster
  • Continuously improve our website for you
  • Make our services more efficient

We do not use cookies to:

  • Collect any personally identifiable information (without your express permission)
  • Collect any sensitive information
  • Pass data to advertising networks
  • Pass personally identifiable data to third parties
  • Pay sales commissions

The information collected by cookies may include the IP address of the device you are using and information about sites that IP address has come from, the pages accessed on our site and the next site visited.

If the settings on your software that you are using to view this website (your browser) are adjusted to accept cookies we take this, and your continued use of our website, to mean that you are fine with this. Should you wish to remove or not use cookies from our site you can, however doing so will likely mean that our site will not work as you would expect.

Social Networking Services

We use social networking services such as Twitter, Facebook and YouTube to communicate with the public about the Human Variome Project. When you communicate with us using these services we may collect your personal information, but we only use it to help us to communicate with you and the public. The social networking service will also handle your personal information for its own purposes. These sites have their own privacy policies.

Email lists

We collect your email and, if you provide it, other contact details when you subscribe to our email lists. We only use this information for the purpose of sending you regular updates on the activities of the Human Variome Project, and to administer the lists.


We very rarely disclose personal information. When we do, we do so very carefully.

Membership Lists

Membership lists are only made available to other members of the Human Variome Project Consortium. You can control how much of the personal information that we have collected about you appears on these lists through the privacy settings available when editing your user profile on the Human Variome Project website.

Disclosure of personal information overseas

Generally we only disclose personal information overseas so that we can provide you with the services you requested from us. For example, if you registered for a conference that we are running that is taking place overseas, then we may need to disclose some of your personal information to an overseas entity in order to secure accommodation bookings, etc.

Personal information that you provide via the Human Variome Project website is stored on servers that are located overseas. Additionally, web traffic information is disclosed to Google Analytics when you visit our websites and our social network providers and their partners may collect and hold your personal information overseas if you make use of these services through our website.

Quality of personal information

To ensure that the quality of the personal information we collect we record information in a consistent format, regularly audit our contact lists to check their quality and provide you with a means of updating your own personal information via the Human Variome Project website.

Storage and security

We regularly assess the way that we collect, use, store and disclose personal information to ensure its security. We destroy personal information in a secure manner when we no longer need it.

Access and correction

You can access and correct the personal information we have about you by visiting your member profile on the Human Variome Project website.


Complaints about the way we handle your personal information can be made in writing to:

Privacy Complaints Officer
Human Variome Project International Ltd.
Level 5, 234 Queensberry Street
University of Melbourne
Victoria, Australia