Genetic Support Network of Victoria

Privacy Policy

Last updated: 25th June, 2024

In this policy, “GSNV”, “we”, “us” or “our” refers to the Genetic Support Network of Victoria (GSNV). The Science Within Us is an educational tool developed by GSNV.

This Privacy Policy explains how GSNV handles personal information relating to individuals with whom GSNV interacts. This includes users and visitors (students, educators, teachers, parents, or any other person accessing the educational content or services provided by GSNV,) education institutions and their affiliated organisations (referred to in this policy as ‘you’).

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 includes your 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.

What personal information does GSNV 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):

Contact information such as your name, email address and phone number
Professional Information: such as the name of your workplace or school.
User generated Content: Any information, materials or content that you provide to GSNV such as comments, feedback or contributions to interactive features.
Usage Data: Information about how you interact with our website, including your browsing activies, preferences and device information (such as IP address, browser type and operating system)
information collected through the use of cookies on our websites and other tracking technology used on our social media assets; 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.

We may also collect information from time to time that is not “personal information” (and therefore falls outside of the application 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.

How and when does GSNV collect personal information?

We endeavour to collect your personal information directly from you unless you consent to us collecting it from someone else, it is unreasonable or impracticable to collect it directly from you, or as otherwise permitted by law.

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 and such other matters as are required by law.

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 (e.g by filling out forms, registering for an account or contacting us, completing a survey or webpage form),; or
through your access and use of our website (including through the placement of cookies discussed below).

Cookies and other analytics tools

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.

We also use other analytics tools to identify people who visit our websites (including our project-specific websites such as the GenV website) from their social media accounts. This helps us to understand how people arrive at our website and what they may be interested in understanding about us or our work.

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.

For what purposes does GSNV 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 as consented to by you, including research in relation to genetics, mental health, educational outcomes, and 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 and social media;
for the administrative, employment, planning, service development, quality control and research purposes of GSNV;
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).

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

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.

How does GSNV 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 GSNV’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.

Who may GSNV 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 or other sensitive 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 you deal with are responsible for informing you about their own privacy practices.

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 …. (see details in section 15 below).

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

If you believe that your personal information has not been handled in accordance with this privacy policy or otherwise in accordance with applicable laws, please contact the …. (see details in section 15 below) and provide details of the incident so that we can appropriately investigate and attempt to address 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.

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.

Contacting us about an enquiry or complaint

If you have an enquiry about this privacy policy, or a complaint regarding the handling of your personal information, please contact :

The Science within Us Project Officer,
Genetic Support Network Victoria

50 Flemington Rd, Parkville

Victoria 31052

Email: thesciencewithinus@mcri.edu.au

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.