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GenV – Privacy Collection Notice

Last updated: December 2020

Generation Victoria (GenV) is a research study led by the Murdoch Children’s Research Institute (MCRI) (“we” / “us”). As part of the GenV study, MCRI will collect personal information about participants, including their name, date of birth, a wide range of health information and biosamples.

While most of this information is collected directly from participants, some information may be collected from third parties, including:

  • the Victorian Infant Hearing Screening Program run by the Royal Children’s Hospital;
  • government agencies (such as Births, Deaths and Marriages); and
  • health service providers (including pathology laboratories).

MCRI collects this information for the purpose of running the GenV study, including to contact participants and for approved health research. MCRI may not be able to run the GenV study without this information.

MCRI may disclose the personal information it collects relating to participants to third parties, including to pre-approved researchers and agencies, and to our services providers. Some of these third parties may be located overseas, including the United States and Japan and other countries listed in MCRI’s privacy policy.

MCRI’s privacy policy contains further information about how we handle personal information, and how you can contact us (including to seek access to or correct any personal information we hold about you or make a privacy complaint). It also contains information about how we will deal with a privacy complaint.

You can also contact our Privacy Officer at legal@mcri.edu.au for further information.

GenV and Me – Terms of Use

LAST UPDATED: APRIL 2022

Generation Victoria (“GenV”) is a research study led by the Murdoch Children’s Research Institute (“MCRI”, “we”, “us” or “our”). GenV and Me is the application that GenV participants can use to complete activities about their child and family (“App” or “GenV and Me”). MCRI partnered with WeGuide Pty Ltd (“WeGuide”) to build the App. By using the App (whether downloaded or viewed on an internet browser), you accept these Terms of Use (“Terms”) and agree to follow them. If you do not agree to these Terms, you must not use the App.

  1. Use of the App
    • a) You can only use the App, or provide personal information through the App, if you are:
      i. a GenV participant who has given written consent to participate in GenV;
      ii. an Australian resident aged 15 years or over (and if you are under 18, you need your parent or guardian’s consent); and
      iii. have a registered App account.
    • b) You are responsible for how you use the App. You can only use it to participate in GenV and must follow these Terms. You must not use the App for any other reason, for example commercial purposes or spam. You should contact us immediately if you think the App is being used for something other than GenV and Me.
    • c) Please provide only true and accurate information. If that information changes, tell us as soon as possible.
    • d) You must not give your account or log-in details to any other person or let them access or use the App. Only the GenV participant who created the App account should access and complete the activities in the App. You are responsible for this and any activity on your account. You must not access any other user’s account or try to find out their log-in details.
    • e) You should secure your internet, devices and App account, for example with strong passwords or pins. If you do not, others may access your information. MCRI and WeGuide are not responsible for any unauthorised access from a failure to secure your account.
    • f) If you use a shared email address or phone number and do not implement a unique password or pin, the people who share it may have access to your information, including messages that we send you, activities we ask you to complete and your responses. We are not responsible for any unauthorised access in connection with this. Please contact us if you would like to provide a different email address or phone number.
    • g) If you use the App on a shared device, you should log out or lock the device after use. If you do not, other users may have access to your information, including messages that we send you, activities we ask you to complete and your responses. These security steps are your responsibility.
    • h) Third party applications and plugins can interfere with the App. If you use them or have them installed on your device or internet browser, you may have trouble logging in to the App or completing the GenV activities. For the App to work correctly you need a good internet connection and a device that supports the App. You will need to arrange this. If the App is not working, please refer to the FAQs in the App then contact us if needed.
    • i) You must not do or try to do anything to all or part of the App or its software, including:
      i. decompile, reverse engineer or disassemble it;
      ii. copy, change, interfere with, remove notices from or distribute it;
      iii. use it to build or do anything that competes;
      iv. introduce viruses, computer code, files or programs that impact it or user devices; or
      v. access restricted parts of it or any App or user data.
    • j) You must not use the App, or provide any data or information, in a way that:
      i. violates or infringes the rights of MCRI, WeGuide or third parties;
      ii. is against the law, offensive, defamatory, fraudulent, false, misleading or deceptive;
      iii. includes personal information about another person without their consent; or
      iv. harms the systems, servers, networks or security of MCRI, WeGuide or third parties.
  2. Stopping your access
    • a) At any time, for any reason and without telling you, MCRI or WeGuide can:
      i. change, suspend or stop using or updating all or part of the App;
      ii. suspend, limit or stop your access to all or part of the App and delete your App account (including if MCRI or WeGuide believes you are not following these Terms or you are using the App incorrectly or inappropriately); and
      iii. take any action they think is appropriate if there is a security issue.
      b) If your access to the App has been suspended, limited or stopped and you would like to query or renew your access, please contact us using the details provided below.
  3. Liability and responsibility
    • a) To the extent permitted by law, MCRI and WeGuide:
      i. are not responsible or liable for any loss or claim because of or connected to your use of the App or its content; and
      ii. do not make any promises about the App. For example, they do not promise that there will be no errors, that all errors can be fixed, that the App will always be available or will be secure and free from all harmful code, bugs or viruses or that the information in the App is correct, up to date or complete.
    • b) MCRI and WeGuide aim to keep the App secure, working well and fix any problems as soon as possible. Sometimes access or use is interrupted, for example during maintenance or updates or for other reasons outside of our control.
    • c) MCRI and WeGuide are not responsible for any third party websites linked on the App or the app store you got the App from. They may have their own terms and conditions that you need to follow.
    • d) MCRI and WeGuide are not responsible for the activities of each other or any third parties.
    • e) You are responsible for any loss, harm or claim that is connected to your use of the App outside the scope of these Terms. This does not apply if you are simply following the instructions in the App.
  4. Intellectual Property
    • a) The content of the App (including words and logos) and the software that makes the App work are made available to you only for the purposes of participating in GenV.
  5. Privacy
    • a) The data you provide when using the App may be stored and processed. The GenV Privacy Information page contains information about how MCRI and WeGuide collect, use and disclose your personal information. It can be found here.
    • b) WeGuide may use anonymous and aggregated information (information about groups not individuals) provided in the App to make the App easier to use.
  6. Not medical or health advice
    • a) The information provided in the App is not medical, health or any other professional advice. If you have medical or health concerns, you should speak to a professional. If it is an emergency, contact 000 or go to an emergency department.
  7. Other important things
    • a) The laws of Victoria, Australia apply to these Terms. If there is an issue, the Victorian courts have exclusive jurisdiction to hear and resolve it.
    • b) We may change these Terms, so you should check them from time to time. We will use reasonable efforts to tell you before making any important changes (eg by sending you a message in the App). If you keep using the App, you will be deemed to have accepted the changes.
    • c) If any part of these Terms is invalid, that part is reduced or removed but the rest of these Terms still apply.
  8. Contact information
    • a) If you have any questions, you may contact us by emailing genv@mcri.edu.au.

GenV and Me – Privacy Information

LAST UPDATED: MARCH 2022

What personal information is collected and how is it collected and stored?

MCRI and WeGuide collect personal information about you in a few ways, including when you create an App account, use the App and interact and provide personal information in any other way. This may include your name, email address, other contact details, responses to GenV activities (including sensitive and health information) and any other personal information you choose to provide.

MCRI and WeGuide may also collect information about your interactions with the App, including your usage and preferences. In many cases, it is not necessary to provide the requested personal information to use the App. However, we will tell you when personal information is required (eg so that we can verify your identity in order for you to access the App).

Your personal information may be stored in the App, in Amazon Web Servers in Sydney, Australia, in the Heroku cloud application platform in Sydney, Australia and in MCRI’s GenV systems located in Melbourne, Australia.

How is personal information used?

MCRI and WeGuide may use your personal information:

  1. for the purposes of GenV and under the consent you provided to participate in GenV;
  2. to help you access and use the App;
  3. to answer your questions and send you important information about the App, the Terms or other related things;
  4. in a de-identified and/or aggregated form for business purposes, including data analysis, audits, developing new products and improving the App and your experience; or
  5. if they think it is necessary or appropriate:
    • under applicable laws or legal processes;
    • to answer requests from public and government authorities; or
    • to enforce the Terms.

How is personal information disclosed?

MCRI and WeGuide may disclose your personal information:

  1. for the purposes of GenV and under the consent you provided to participate in GenV;
  2. to third party service providers who provide services including operational reporting, website hosting, data analysis, IT, email / SMS delivery, backup, auditing and other similar services; or
  3. as required or permitted:
    • under applicable laws or legal processes;
    • to answer requests from public and government authorities; or
    • to enforce the Terms.

Do you use cookies or other similar technologies?

WeGuide and MCRI use technologies that help track and monitor how you use and interact with the App. This information may be used to improve the App, other products and services, your experience and the GenV activities. It is mostly non-personal information, but it may include or be paired with some personal information. This helps us understand what is working well and what could work better. This is similar to cookies on websites.

Will you update this GenV and Me Privacy Information?

We may change this GenV and Me Privacy Information, so you should check it from time to time. Changes will generally involve providing additional information on how we use personal information, new technologies that we incorporate to improve our systems and security and updates to Australian Privacy Laws or industry best practice. We will use reasonable efforts to tell you before making any important changes (eg by sending you a message in the App).

Is there any other information you need to know and how do you contact us?

Have a look at the GenV Privacy Information page (including the GenV Privacy Collection Notice) here and MCRI’s Privacy Policy here.

GenV’s Privacy Collection Notice contains information about the personal information GenV collects and how it handles that information. MCRI’s Privacy Policy contains further information about how MCRI handles personal information, and how you can contact us (including to seek access to or correct any personal information we hold about you or make a privacy complaint). It also contains information about how we will deal with a privacy complaint.

You can also contact our Privacy Officer at legal@mcri.edu.au for further information.