Thank you for visiting our Participant Portal.
This Participant Portal is owned and operated by the Australian Reproductive Genetic Carrier Screening Project (Mackenzie’s Mission) and Australian Genomics, which are administered by the Murdoch Children’s Research Institute (MCRI). By accessing and/or using this Participant Portal, you agree to these Terms and Conditions (Terms), which include our Participant Portal Privacy Policy. You should review this Privacy Policy and these Terms carefully, and immediately cease using our Participant Portal if you do not agree to these Terms.
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 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.
In these Terms, ‘us’, ‘we’ and ‘our’ means MCRI as agent for the institutions participating in Mackenzie’s Mission.
Registration
You must be a registered member to access the Participant Portal.
When you register and activate your account, you will provide us with personal information such as your name, email address, telephone number and postcode. You must ensure that this information is accurate and current. You consent to us handling all personal information we collect in accordance with our Participant Portal Privacy Policy, including the marketing purposes described in that policy.
When you register and activate your account, you will use your email address and set a password. You are responsible for keeping this email address and password secure and are responsible for all use and activity carried out under this account.
To create an account:
- either you or your partner must have been invited to take part in Mackenzie’s Mission by a participating healthcare provider and received a Study Invitation Form;
- you must be an Australian resident;
- you must be clinically managed in Australia;
- you must be aged 18 years or over;
- if you are pregnant, you must enrol before 10 weeks of pregnancy; and
- you must be available to consent to genetic carrier screening and provide mouth swab samples.
Collection Notice
We collect personal information about you in order to provide you with the ability to participate in the Mackenzie’s Mission study through the Participant Portal and for purposes otherwise set out in our Participant Portal Privacy Policy.
We may, on a confidential basis, disclose that information to third parties that help us deliver our services (including information technology suppliers, communication suppliers and our partner institutions) or as required by law. If you do not provide this information, we may not be able to make the Participant Portal functionality available to you. We will not disclose your personal information to recipients that are located outside of Australia.
Our Privacy Policy explains: (i) how we store, use and disclose, and how you may access and correct your personal information; (ii) how you can lodge a complaint regarding the handling of your personal information; and (iii) how we will handle any complaint. If you would like any further information about our privacy policies or practices, please contact the MCRI Privacy Compliance Officer at notices@mcri.edu.au.
By providing your personal information to us, you consent to the collection, use, storage and disclosure of that information as described in the Privacy Policy and these Terms.
Your health information
We may collect health information about you in order to provide you with our services and the option of contributing to other research. Any collection of health information will be handled in accordance with our Privacy Policy, as well as applicable State and Territory privacy and health data protection laws, including for example the Health Records Act 2001 (Vic) and the Health Records and Information Privacy Act 2002 (NSW).
Accuracy, completeness and timeliness of information
The information on our Participant Portal is not comprehensive and is intended to provide a summary of the subject matter covered. While we use all reasonable attempts to ensure the accuracy and completeness of the information on our Participant Portal, to the extent permitted by law, including the Australian Consumer Law, we make no warranty regarding the information on this Participant Portal. You should monitor any changes to the information contained on this Participant Portal.
We are not liable to you or anyone else if interference with or damage to your computer systems occurs in connection with the use of this Participant Portal or a linked website. You must take your own precautions to ensure that whatever you select for your use from our Participant Portal is free of viruses or anything else (such as worms or Trojan horses) that may interfere with or damage the operations of your computer systems.
We may, from time to time and without notice, change or add to the Participant Portal (including the Terms) or the information, products or services described in it. However, we do not undertake to keep the Participant Portal updated. We are not liable to you or anyone else if errors occur in the information on the Participant Portal or if that information is not up-to-date.
Linked sites
Our Participant Portal may contain links to websites operated by third parties. Those links are provided for convenience and may not remain current or be maintained. Unless expressly stated otherwise, we do not endorse and are not responsible for the content on those linked websites and have no control over or rights in those linked websites.
Intellectual property rights
Unless otherwise indicated, we own or license from third parties all rights, title and interest (including copyright, designs, patents, trademarks and other intellectual property rights) in this Participant Portal and in all of the material (including all text, graphics, logos, audio and software) made available on this Participant Portal (Content).
Your use of this Participant Portal and use of and access to any Content does not grant or transfer any rights, title or interest to you in relation to this Participant Portal or the Content. However we do grant you a licence to access the Participant Portal and view the Content on the terms and conditions set out in these Terms and, where applicable, as expressly authorised by us and/or our third party licensors.
Any reproduction or redistribution of this Participant Portal or the Content is expressly prohibited and may result in civil and criminal penalties. In addition, you must not copy the Content to any other server or location.
All other use, copying or reproduction of this Participant Portal, the Content or any part of it is prohibited, except to the extent permitted by law.
No commercial use
This Participant Portal is for your personal, non-commercial use only. You may not modify, copy, distribute, transmit, display, perform, reproduce, publish, license, commercially exploit, create derivative works from, transfer, or sell any Content, software, products or services contained within this Participant Portal. You may not use this Participant Portal, or any of its Content, to further any commercial purpose, including any advertising or advertising revenue generation activity on your own website.
Unacceptable activity
You must not do any act that we would deem to be inappropriate, is unlawful or is prohibited by any laws applicable to our Participant Portal, including but not limited to:
- any act that would constitute a breach of either the privacy (including uploading private or personal information without an individual’s consent) or any other of the legal rights of individuals;
- using this Participant Portal to defame or libel us, our employees or other individuals;
- uploading files that contain viruses that may cause damage to our property or the property of other individuals;
posting or transmitting to this Participant Portal any non-authorised material including, but not limited to, material that is, in our opinion, likely to cause annoyance, or which is defamatory, racist, obscene, threatening, pornographic or otherwise or which is detrimental to or in violation of our systems or a third party’s systems or network security. If we allow you to post any information to our Participant Portal, we have the right to take down this information at our sole discretion and without notice.
Warranties and disclaimers
To the maximum extent permitted by law, including the Australian Consumer Law, we make no warranties or representations about this Participant Portal or the Content, including but not limited to warranties or representations that they will be complete, accurate or up-to-date, that access will be uninterrupted or error-free or free from viruses, or that this Participant Portal will be secure.
We reserve the right to restrict, suspend or terminate without notice your access to this Participant Portal, any Content, or any feature of this Participant Portal at any time without notice and we will not be responsible for any loss, cost, damage or liability that may arise as a result.
Liability
To the maximum extent permitted by law, including the Australian Consumer Law, in no event shall we be liable for any direct and indirect loss, damage or expense – irrespective of the manner in which it occurs – which may be suffered due to your use of our Participant Portal and/or the information or materials contained on it, or as a result of the inaccessibility of this Participant Portal and/or the fact that certain information or materials contained on it are incorrect, incomplete or not up-to-date.
Jurisdiction and governing law
Your use of the Participant Portal and these Terms are governed by the law of Victoria and you submit to the non-exclusive jurisdiction of the courts exercising jurisdiction in Victoria.