The Australian Reproductive Genetic Carrier Screening Project (Mackenzie’s Mission) is funded by the Australian Government’s Medical Research Future Fund (MRFF) as part of the Genomics Health Futures Mission (GHFM) grant GHFM73390 (MRFF-G-MM). The grant is administered by the Murdoch Children’s Research Institute (MCRI), through Australian Genomics. The contents of the Mackenzie’s Mission Participant Portal are solely the responsibility of Mackenzie’s Mission and do not reflect the views of the MRFF.
As at 31 January 2020, the Mackenzie’s Mission study team comprises more than 80 members across participating research institutes, universities, hospitals, clinical genetics services and diagnostic laboratories. A list of our study team members is available here. This list may be updated from time to time.
Your consent to participate in the Mackenzie’s Mission study and have reproductive genetic carrier screening will also be governed by the relevant consent form/s which you provide to us through our Participant Portal.
By using the Participant Portal, you will be able to choose the types of organisations outside the Mackenzie’s Mission study that can use your personal information and the kinds of research they can do with your personal information. You will also be able to change your consent preferences at any time by using your login details to access the Participant Portal. Note that your use of the Participant Portal will also be governed by our Terms and Conditions.
Personal information includes information or an opinion about an individual that is reasonably identifiable. For example, this may include your name, age, gender, postcode and contact details. It may also include financial information, including your credit card information.
Sensitive information includes information or an opinion about an individual’s racial or ethnic origins, political opinions, religious beliefs, sexual orientation, or criminal record that is also personal information. Sensitive information also includes health information, genetic information or biometric information that is used for verification or biometric templates.
What personal information do we collect?
We may collect the following types of personal information:
- street and mailing address;
- email address;
- telephone number and other contact details;
- date of birth;
- information you provide to us through participant surveys, including: your demographic information; your reproductive history; your family history of any genetic conditions; whether you have had genetic carrier screening prior to this study, and if so, the results of that screening; your knowledge of genetics and genetic carrier screening;
- your genetic information, including test results which contain genetic information;
- details of the changes to your consent preferences, including any additional information necessary to enact your preferences and respond to these changes;
- statistics on page views, traffic to and from the sites, IP address and standard web log information;
- any additional information relating to you that you provide to us directly through our Participant Portal or indirectly through your use of our Participant Portal or online presence or through other websites or accounts from which you permit us to collect information; and
- any other personal information, or sensitive information that may be required in order to facilitate your dealings with us.
We may collect these types of personal information either directly from you, or from third parties. We may collect this information when you:
- register on our Participant Portal;
- use our Participant Portal to provide your consent to participate in the Mackenzie’s Mission study and have reproductive genetic carrier screening;
- complete the participant surveys and education module in our Participant Portal;
- use our Participant Portal to change your consent preferences for research outside the Mackenzie’s Mission study;
- communicate with us through correspondence, chats, email, or when you share information with us from other social applications, services or websites; or
- interact with our sites, services or content.
Why do we collect, use and disclose personal information?
We may collect, hold, use and disclose your personal information for the following purposes:
- to conduct research to investigate how reproductive genetic carrier screening should be provided as a national program;
- to evaluate the outcomes of genetic carrier screening, the psychosocial impacts reported by couples, the ethical issues raised by screening, and the health economic impacts of screening.
- to share your de-identified information with other researchers or laboratories which are also undertaking ethically-approved research for the benefit of healthcare;
- to enable you to access and use our Participant Portal and/or services to participate in Mackenzie’s Mission and manage your consent preferences;
- to operate, protect, improve and optimise Mackenzie’s Mission, our Participant Portal and/or services and our users’ experience, and to perform analytics;
- to send you service, support and administrative messages, reminders, technical notices, updates, security alerts, and information requested by you;
- to administer surveys managed by us or our partner institutions; and
- to comply with our legal obligations, resolve any disputes that we may have with any of our users, and enforce our agreements with third parties.
Do we use your personal information for direct marketing?
We may send you direct marketing communications and information about our services, for example in the nature of inviting you to participate in our studies. This may take the form of emails, SMS, mail or other forms of communication, in accordance with the Spam Act and the Privacy Act. You may opt-out of receiving marketing materials from us by contacting us using the details set out below or by using the opt-out facilities provided (e.g. an unsubscribe link).
To whom do we disclose your personal information?
- existing or potential third-party suppliers and service providers based in Australia (including information technology providers for the operation of our Participant Portal or in connection with providing our services to you);
- the institutions participating in Mackenzie’s Mission (including MCRI) for the operation of the Participant Portal, or in connection with providing our services to you;
- professional advisers;
- anyone to whom Mackenzie’s Mission or our undertaking (or any part of them) are transferred, or offered to be transferred;
- specific third parties authorised by you to receive information held by us; and/or
- other persons, including government agencies, regulatory bodies and law enforcement agencies, or as required, authorised or permitted by law.
If you do not consent to the disclosure of your personal information to these third parties, we may not be able to make the Participant Portal functionality available to you.
- all approved Mackenzie’s Mission investigators and coordinators who are named on our ethics list (RCH 2019.097) and for a research project approved by a Human Research Ethics Committee; and
- any entity or institution which has or receives approval by the Australian Genomics Data Access Committee for a research project approved by a Human Research Ethics Committee.
Disclosure of personal information outside Australia
We may disclose your genetic information, which has undergone our de-identification process to recipients outside of Australia, located in Argentina, Australia, Austria, Bangladesh, Belgium, Brazil, Bulgaria, Canada, China, Denmark, Estonia, Finland, France, Georgia, Germany, Ghana, Greece, Hong Kong, India, Ireland, Israel, Italy, Japan, Korea, Republic of, Luxemburg, Malaysia, Mexico, Netherlands, New Zealand, Norway, Philippines, Portugal, Qatar, Russian Federation, Singapore, Slovenia, South Africa, Spain, Sri Lanka, Sweden, Switzerland, Taiwan ROC, Turkey, United Kingdom, United States, Bolivian Republic of Venezuela with your consent.
Otherwise, we will not disclose your personal information to recipients outside of Australia without your express consent.
To the extent that your genetic information which has undergone our de-identification process, or any other personal information, is disclosed overseas with your consent, we will take reasonable steps to ensure that any overseas recipient will deal with such personal information in a way that is consistent with the Australian Privacy Principles.
Using our Participant Portal and cookies
We may collect personal information about you when you use and access our Participant Portal.
While we do not use browsing information to identify you personally, we may record certain information about your use of our Participant Portal, such as which pages you visit, the time and date of your visit and the internet protocol address assigned to your computer.
We may also use ‘cookies’ or other similar tracking technologies on our Participant Portal that help us track your Participant Portal usage and remember your preferences. Cookies are small files that store information on your computer, TV, mobile phone or other device. They enable the entity that put the cookie on your device to recognise you across different websites, services, devices and/or browsing sessions. You can disable cookies through your internet browser but our Participant Portal may not work as intended for you if you do so.
We may hold your personal information in either electronic or hard copy form. We take reasonable steps to protect your personal information from misuse, interference and loss, as well as unauthorised access, modification or disclosure and we use a number of physical, administrative, personnel and technical measures to protect your personal information as defined in our Information Security Strategy, available upon request.
For example, the personal information you provide us with is added to a secure database maintained by us. This database secures your personal information by using appropriate encryption and secure data handling processes for all information provided via our Participant Portal. Further, we also transfer and store your personal information on our reputable third party suppliers of IT infrastructure. Those servers are located in Canberra, Sydney and Melbourne, Australia. However, we cannot guarantee the security of your personal information.
Accessing or correcting your personal information
You can access the personal information we hold about you by contacting us using the information below. Sometimes, we may not be able to provide you with access to all of your personal information and, where this is the case, we will tell you why. We may also need to verify your identity when you request your personal information.
If you think that any personal information we hold about you is inaccurate, please contact us and we will take reasonable steps to ensure that it is corrected.
Making a complaint
If you think we have breached the Privacy Act, or you wish to make a complaint about the way we have handled your personal information, you can contact us using the details set out below. Please include your name, email address and/or telephone number and clearly describe your complaint. We will acknowledge your complaint and respond to you regarding your complaint within a reasonable period of time. If you think that we have failed to resolve the complaint satisfactorily, we will provide you with information about the further steps you can take.
Murdoch Children’s Research Institute
Royal Children’s Hospital
50 Flemington Road
Parkville VIC 3052
Effective: 31 January 2020