Website Privacy

    The Victorian Clinical Genetics Services Website Privacy Policy

    The Victorian Clinical Genetics Services (VCGS, we, our or us) recognises the importance of protecting the privacy and rights of individuals in relation to their personal information.

    This Privacy Policy explains how we collect, use, store, share and protect any personal information you choose to give us when you use this website or contact us directly. We are committed to ensuring that your privacy is protected and this Privacy Policy helps you to make an informed decision about your relationship with us, so please read it carefully.

    We may amend or update this policy at our discretion. You should check this page from time to time to ensure that you are happy with any changes.

    1. Your consent

    By using our website you expressly consent to our collection, use and disclosure of your personal information in accordance with this Privacy Policy.

    If you choose to provide us with personal information, you also expressly consent to the transfer and storage of that information on the servers of our reputable third party suppliers of IT infrastructure. Those servers are located in Melbourne, Australia.

    2. What is personal information?

    Personal information means any information or opinion, whether true or not, about you from which your identity is apparent or can reasonably be established.

    3. What, how and why we collect your personal information

    When visiting our website we automatically collect and store the following information:

    • the name of the domain from which you access the Internet (for example, unimelb.edu.au if you are connecting from The University of Melbourne's domain);
    • the date and time you access our website; and
    • the internet address of the website from which you linked to our site.

    We use such information to measure the number of visitors to the different sections of our website, and to help us make our website more useful to visitors.

    If you decide to send us personal information, for example, in an electronic communication containing a question or comment, by completing an online profile, making a donation, subscribing to newsletter function or otherwise sharing your personal information with us, we may use such information:

    • to respond to your requests and contact you when necessary;
    • to verify your identity;
    • to process payments and provide receipts;
    • to provide you with targeted content about us and activities to which you are interested in;
    • to promote our programs and activities including fundraising events and activities;
    • to send you news and further information about us including promotional material which we believe may be of interest to you; and
    • to undertake research for us including by participating in voluntary surveys and polls. Your personal information may include your name, address, telephone numbers, email address, your child's name, age and school or bank/credit card details if you are paying for services, or If you do not wish to have your or your child's personal information used for our promotional or marketing activities, you may always opt-out of receiving future mailings (see the "Opt Out" section in our Terms & Conditions).

    4. Who do we disclose your personal information to? We will not provide your personal information to any third parties except to:

    • parties that you authorise us to disclose your personal information to;
    • our partners, affiliates, contractors and consultants who assist us in providing services to us and are required by us to protect your personal information;
    • your organisation, if you are acting on behalf of an organisation;
    • law enforcement or other government agencies or by a court or like body;
    • our professional advisors; or
    • where we are otherwise permitted or required by the Privacy Act or any other law.

    5. Anonymity

    You have the option of whether to provide personal information or to remain anonymous. If you prefer that we not collect your personal information, please do not submit or provide it. Please note that we may not be able to fully provide our services to you or respond to you if you choose not to provide personal information.

    6. Accuracy and access to your personal information

    We value the importance of keeping our records current and your right to access personal information we hold about you. If you think that any information we hold about you is inaccurate or if you wish to access your personal information or complain about our use of it, please contact us on the details below. We will take all reasonable steps to comply with your request and if we deny your request for access, we will tell you why.

    7. Security

    In order to prevent unauthorised access or disclosure of your personal information, we have put in place suitable physical, electronic and managerial procedures to safeguard and secure the information we collect from you. Any personal information you provide us with is added to a secure database maintained by us. This website secures your private information by using a SSL (secure socket layer) certificate for all information provided via our website. We take reasonable steps to keep personal information secure from unauthorised use or disclosure. However, the Internet is not a secure environment. If you send us information via the Internet you do so at your own risk.

    8. Contact us

    If you have any questions about this Privacy Policy, our practices, our website, or our dealings with your personal information, you can contact us.

    General Privacy

    MURDOCH CHILDREN’S RESEARCH INSTITUTE- PRIVACY POLICY

    In this policy, “MCRI”, “we”, “us” or “our” refers to the Murdoch Children's Research Institute, together with its related bodies corporate, including the Victorian Clinical Genetic Services (VCGS).

    We recognise the utmost importance of protecting the privacy and rights of individuals in relation to their personal information. This Privacy Policy has been developed in accordance with applicable privacy laws and regulations, including the Privacy Act 1988 (Cth) (Privacy Act), Health Records Act 2001 (Vic), and the General Data Protection Regulation (GDPR) in Europe, as amended from time to time.

    This Privacy Policy explains how MCRI handles personal information relating to individuals with whom MCRI interacts, including research participants, donors, customers, patients, medical professionals, consultants and contractors (referred to in this policy as ‘you’). This Privacy Policy does not apply to our acts and practices directly related to a current or former employment relationship between us and an employee, or to an employee record held by us relating to the employee.

    1. Personal information and sensitive information

    The expression "personal information" means information or an opinion about an identified individual, or an individual who is reasonably identifiable (directly or indirectly). This may include your name, address, telephone number, email address, online identifier (such as an IP address) and your profession or occupation.

    Some personal information is also “sensitive information.” Sensitive information means health information (including genetic information or biometric information), information about your racial or ethnic origins, your political opinions, your political associations, your religious beliefs/affiliations, your philosophical beliefs, whether you are a member of a trade or professional association or trade union, your sexual orientation/practices or your criminal record.

    1. What personal information does MCRI collect and hold?

    We only collect personal information if it is reasonably necessary for one or more of our functions or activities. Depending on the nature of your interactions with us, we may collect the following types of personal information (whether in hard copy or electronic form):

    • name;
    • date of birth;
    • contact details such as mailing or street address, email address, and telephone or facsimile number;
    • occupation or job title;
    • health and medical history or information;
    • information about your dependents or your pregnancy (where reasonably necessary);
    • any other information relevant to a MCRI research project you have agreed to participate in;
    • bank account or credit card details if you are making a donation or payment;
    • photographs of you or your dependents at a MCRI fundraising or other event;
    • information collected through the use of cookies on our websites; and
    • other information as required to carry out our functions and activities as an organisation.

    Where the personal information is also sensitive information, we will only collect it with your prior consent or otherwise as permitted by law. Usually we will require your consent to be in writing.

    We may also collect information from time to time that is not “personal information” (and therefore falls outside of this Privacy Policy) because it does not identify you or any other individual. For example, we may collect anonymous answers to surveys or aggregated information about how people use our website and services.

    1. How and when does MCRI collect personal information?

    We endeavour to collect your personal information directly from you unless it is unreasonable or impracticable to do so. If we collect your personal information from someone other than you, we will take such steps (if any) as are reasonable in the circumstances to ensure that you are or have been made aware of what information has been collected, and the purpose of that collection. When collecting personal information from you, we may collect it in ways including:

    • from your written communications with us;
    • during conversations between you and our staff (which includes paid employees students, contractors and volunteers);
    • when you complete documentation, either in hard copy or electronically, such as via a web page form;
    • when you participate in research activities or other activities on the Melbourne Children’s Campus (which includes MCRI, The Royal Children’s Hospital and the University of Melbourne); or
    • through your access and use of our website (including through the placement of cookies discussed below).
    1. Cookies

    Like most websites, our websites use 'cookies' to improve your online experience and to help us to monitor and improve our websites and services for future visitors.

    A cookie is a small text file that is placed on your device when you visit a website. Cookies can collect information such as your Internet Protocol (IP) address, the URLs of sites you have visited before or after accessing the website, and how long you have spent on a particular site. Cookies cannot execute programs or be used to access other information on your device.

    For example, our websites use Google Analytics, a service which uses cookies in order to collect data and generate reports which help us understand website traffic and webpage usage. Google Analytics transmits the website traffic data to Google servers in the United States, but does not associate your IP address with any other data held by Google.

    By using our websites, you give us your permission to the placement of cookies on your device.

    If you would like to limit the use of cookies, you can do so by changing your internet browser settings. This means that you can set your preferences regarding the use of cookies before you start browsing, or you can delete cookies once you have finishing visiting a website.

    1. External sites

    Our websites may contain links to external websites. Those websites are not subject to this Privacy Policy. We are not responsible for the privacy practices or the content of any other website and have no knowledge of whether cookies or other tracking devices are used on those sites. You will need to contact those websites directly to ascertain their privacy standards, policies and procedures.

    1. For what purposes does MCRI collect, hold and use personal information?

    We may collect, hold or use your personal information (including sensitive information) for one or more of the following purposes:

    • to provide services to you;
    • to verify your identity, respond to your requests or as otherwise directed by you;
    • to provide you with news, information and material (including marketing material) in relation to our services;;
    • to promote our programs and activities, including fundraising, corporate philanthropy and education;
    • to undertake medical research as consented to by you, including research in relation to Cell Biology, Clinical Sciences, Genetics, Infection & Immunity, Population Health and other research themes may be determined from time to time;
    • to undertake general research or other reasonable research related activities, including via voluntary surveys and polls;
    • to update our records and keep your contact details up to date;
    • to process and respond to any complaint made by you;
    • to process donations and provide receipts;
    • to enhance your experience of our websites;
    • for the administrative, employment, planning, service development, quality control and research purposes of MCRI;
    • to comply with any law, rule, regulation, lawful and binding determination, decision or direction of a regulator, or in co-operation with any governmental authority;
    • for any other purposes that we notify you of, or that you consent to; and
    • otherwise as permitted by law.

    We will not use your personal information in a manner which is unrelated to or inconsistent with the purpose of its original collection, unless you have consented (other than as permitted or required by law).

    You may opt out of receiving communications from us in relation to news, marketing and fundraising at any time by contacting us using the contact details set out in section 15 below, or where applicable selecting the unsubscribe option in our electronic communications.

    Please note that you cannot opt-out of receiving contractual notifications such as changes to our terms and conditions for the supply of services or other important information.

    In relation to sensitive information, we will not use or disclose this for the purposes of direct marketing unless you have expressly consented.

    1. What happens if you do not provide us with the personal information we request?

    Where possible, we will give you the option to not identify yourself (i.e. to remain anonymous) or deal with us through the use of a pseudonym or to not provide us with your personal information.

    If we do request personal information and you decline to provide it, , please note that in some cases we may not be able to provide the requested services to you, either to the same standard or at all, and we may not be able to provide you with information about services that you may want, including information about related services. Without your personal information, we may also not be able to work with you on an ongoing basis, issue tax deductible receipts or you may be unable to participate in or have access to our research programs, events and activities.

    1. How does MCRI securely hold your personal information?

    We will take reasonable and appropriate steps to protect all personal information which we hold from misuse or loss and from unauthorised access, modification or disclosure. We do this by ensuring that our systems, databases and facilities are secure, and our staff (including paid employees, students, volunteers and contractors) are bound by and comply with our policies and procedures regarding personal information and confidentiality, and by putting in place appropriate contractual terms with third parties.

    Risks are also mitigated through MCRI's commitment to de-identifying or destroying any personal information that is no longer required by us, where possible.

    While we will take all reasonable and appropriate steps, please note that we cannot guarantee or warrant the security of your personal information. This is particularly so in relation to personal information which you send to us using our website or other online means. Although we will take reasonable steps to protect such information, we are not able to warrant or guarantee the security of any information that you transmit to us over the Internet (including through our website), and you do so at your own risk.

    1. Who may MCRI disclose your personal information to?

    In connection with the purposes set out in section 6 above, we may provide your personal information (including your health information), to:

    • our staff, which include our paid employees, students, volunteers and contractors;
    • our professional advisors;
    • our partners, affiliates, research collaborators, contractors and consultants;
    • any organisation or any authorised person with your express consent;
    • a person or organisation to whom we are compelled by law, or otherwise permitted by law, to provide your information; or
    • your organisation, if you are acting on behalf of an organisation.

    Where we transfer your personal information to a third party, we will take reasonable steps to ensure that your personal information is protected and is handled by that third party in accordance with applicable privacy laws.

    If we refer you to a third party service provider, that service provider may also collect and store your personal information. We make no representation or warranties in relation to the privacy practices of any third party service provider and we are not responsible for their collection, use or disclosure of your personal information. Third party service providers are responsible for informing you about their own privacy practices.

    1. Collection and use of your personal information when you make a donation

    If you make a donation to us, we may publish your name and the amount of your donation in our annual report or other MCRI publications. We may also communicate your name and the amount of your donation internally, including to our Board members and to the project team for which you have made a donation and/or to our external partner(s) who organise the fundraising event or collaborate on the project for which you have made a donation. This will always be in accordance with your preferences as notified to us at the time of making the donation (if any). If you wish to remain anonymous in our publications or in our communications with our Board members, the third-party fundraiser or collaborators, please advise us of this in writing by contacting the MCRI Privacy Officer (see details in section 15 below) or by sending an email to [email protected] or by calling the philanthropy team (+61 (3) 9936 6362).

    1. Does MCRI disclose personal information to anyone outside Australia?

    We may be required, from time to time, to disclose your personal information to our international partners and research affiliates or collaborators for the purposes described in section 5 of this Privacy Policy. The locations of our international partners and research affiliates are detailed at section 16.

    Where we transfer your personal information to another country, we will take such steps as are reasonable in the circumstances to protect your personal information and to comply with applicable laws, including those relating to cross-border transfers. To the extent that it is reasonable and practical for us to do so, we will de-identify any such personal information prior to overseas disclosure.

    1. Your rights in relation to your personal information

    We will take reasonable steps to ensure that all personal information we collect, use and disclose is accurate, up-to-date and complete.

    You may request access to any personal information we hold about you at any time. There may be instances where we cannot grant you access to the personal information we hold. For example, we may need to refuse access if granting access would interfere with the privacy of others or if it would result in a breach of confidentiality. If that happens, we will give you written reasons for any refusal.

    If you believe that personal information we hold about you is incorrect, incomplete or inaccurate, then you may request that we amend it. If the personal information we hold about you in incorrect, incomplete or inaccurate, we will take reasonable steps to correct the information without delay. In some circumstances where we correct or update a record, we may still require retention of the original record.

    You can also ask us to delete or de-identify the personal information we hold about you. There may be instances where we cannot agree to your request, such as if we still need the personal information for the purpose for which we collected it, or in order to comply with our legal obligations. If that is the case, we will once again give you written reasons for declining your request.

    If you wish to access your personal information, or request that it be corrected or deleted, please make your request by contacting the MCRI Privacy Officer (see details in section 15 below).

    1. What is the process for complaining about a breach of privacy?

    If you believe that your privacy has been breached, please contact the MCRI Privacy Officer (see details in section 15 below) and provide details of the incident so that we can appropriately investigate and remedy it.

    We may require any complaint to be made in writing first. We will then endeavour to respond to your complaint as soon as possible and within 30 days (or otherwise in accordance with our legal obligations). You are also entitled to report any privacy breach to the Office of the Australian Information Commissioner.

    1. Changes to this Privacy Policy

    We reserve the right to change, modify or update this Privacy Policy. Any revision to this Privacy Policy will be published on our website. The revised version shall take effect immediately upon publication.

    1. Contacting us about an enquiry or complaint

    If you have an enquiry about this privacy policy, or a complaint regarding the treatment of your personal information or a possible breach of your privacy, please contact the MCRI Privacy Officer at:

    Privacy Officer
    Murdoch Children's Research Institute
    Royal Children's Hospital
    50 Flemington Road
    Parkville VIC 3052

    Email: [email protected]
    P: +613 9936 6337

    We will treat your enquiry or complaint confidentially. One of our staff will contact you within a reasonable time after you have made contact with us to discuss your enquiry or complaint and outline options regarding how it may be dealt with. We will aim to ensure that any complaint is resolved in a timely and appropriate manner.

    1. Locations of our international partners and research affiliates

    Our international partners and research affiliates are located worldwide including, but not limited to:

    • New Zealand;
    • USA;
    • Canada;
    • the United Kingdom;
    • EU (including, but not limited to, France, Italy, Finland, Sweden, Netherlands, Cyprus);
    • Japan;
    • Singapore;
    • Hong Kong;
    • Indonesia;
    • Vietnam;
    • Fiji;
    • Thailand;
    • Qatar;
    • Mongolia;
    • Lao PDR;
    • Papua New Guinea;
    • Nigeria;
    • The Gambia;
    • Brazil; and
    • Chile.

    Online Orders Privacy, Terms and Conditions and Refund Policy

    VCGS Payment Portal terms and conditions:

    Thank you for choosing Victorian Clinical Genetics Services (VCGS or we) to order your genetic test. This document contains the terms and conditions that will apply to a patient (You) ordering a genetic test online. Please take a few minutes to review them. If You do not agree with any of these terms and conditions, do not order your genetic test online. If You have any questions, please feel free to contact us by e-mail [email protected] or by phone (1300 118 247).

    Ordering and Payment

    • To order your genetic testing, You must enter Your contact details (including Your address), already have a test request form (completed by a health professional) and pay online with a credit card.
    • For tests that require pre-payment, Your credit card will be debited at the time Your order is completed. Payment requires your mobile phone number and you will receive SMS notification of the transfer. You mobile phone number will not be disclosed to any third party, except when contact is required for the processing of Your test.
    • Your payment will be processed using a secure payment gateway, using NAB merchant facilities and no record of your credit card is retained by VCGS. For NAB terms and conditions see www.nab.com.au.

    Pricing

    • Quoted pricing is in Australian dollars and includes GST (where applicable).
    • Price is subject to change. All reasonable effort is made to communicate pricing changes to referring health professionals.

    Kit delivery

    • If Your test requires a collection kit, we will send it to You at no additional cost.
    • We issue collection kits using express mail delivery services. Kits will be sent to the postal address supplied in the ordering process. Kits should be received within 2-3 business days of placing Your order. If a kit has not arrived within 5 business days or if a kit is damaged upon delivery, please contact us on 1300 118 247.
    • Please read carefully the instructions on the collection kit for the collection of saliva and for shipping the samples back to VCGS. Shipping the samples back to VCGS is at the risk and cost of VCGS.

    Results

    • All results will be sent by VCGS to Your referring doctor. Please refer to the test page on our website for test turn-around-times.

    Cancelling a testing

    • Test cancellation can be organised by contacting us on 1300 118 247.
    • For test fee refund compatibility, please refer to the refund policy.

    Refund policy

    • Where a test fails to produce a result through assay failure or an incorrect or compromised patient sample, a test fee will not be charged. Where a patient has been asked to pay for a test in advance e.g. percept NIPT or prepair carrier screening, the test fee will be refunded in full. The health professional and/or patient will be given the option of re-sampling. In this case only the single test fee will be charged.
    • Where a test is cancelled by the referring doctor or patient during the testing procedure, a partial refund may be applicable. Please contact us on (03) 8341 6201 during business hours to discuss.
    • Refunds are returned electronically back to the credit card that was originally debited.

    Unavoidable delay

    • VCGS is not liable to You for any failure to provide or delay in providing the collection kits or the results if that failure or delay results from a cause beyond VCGS’s reasonable control.

    Privacy

    • VCGS recognises the importance of protecting Your privacy and will take all reasonable precautions to ensure that Your personal information You provide us with is kept confidential and protected from unauthorised access, in accordance with our Privacy Policy. We will only use Your personal information for the purpose of processing and managing Your testing order. If You fail to provide us with Your personal information and scanned copy of Your GP referral, we won’t be able to process Your order. We will not disclose Your personal information to any third party unless required to process and manage Your testing order or unless required or permitted to do so by law or otherwise with your consent. Please consult our Privacy Policy for more information on how to access or seek correction of Your personal information or make a complaint. Payment is made using NAB merchant facilities. For NAB privacy policy, see nab.com.au.

    Liability

    • VCGS’ sole liability for the breach of any guarantee under the Australian Consumer Law in regards to which liability cannot be excluded, is limited to the extent permitted by law, at VCGS’ option, to performing the relevant testing services again at no cost to You or refunding the payment made by You to VCGS (if any).

    These terms and conditions are governed by the laws of the State of Victoria, Australia and were last updated on 8 June 2017. VCGS reserves the right to amend these terms and conditions at any time. Any amendments shall be effective immediately upon notification on VCGS website.