1. Personal information and sensitive information
The expression “personal information” has the meaning given by the Privacy Act. It is information or an opinion that can be used to personally identify you. This may include your name, address, telephone number, date of birth, email address and profession or occupation. If the information we collect personally identifies you, or you are reasonably identifiable from it, the information will be considered to be personal information.
Some personal information is also “sensitive information.” Sensitive information has the meaning given by the Privacy Act. Sensitive information is information about your racial or ethnic origin, your political opinion, your political association, 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, your criminal record or your health information (including genetic information or biometric information).
2. What personal information does Eugene collect and hold?
We only collect personal information if it is necessary for one or more of our functions or activities. We may collect the following types of personal information:
date of birth;
mailing or street address;
telephone or facsimile number;
occupation or job title;
health and medical history or information (this may include information about the physical, mental or psychological health of an individual, genetic or biometric information, including information about an individual that is predictive of the individuals’ health);
information about your dependents or your pregnancy (where reasonably necessary);
bank account or credit card details if you are making a payment for our services; and
photographs of you or your dependents that you share with Eugene or tag within public social media platforms.
Where the personal information is also sensitive information, we will only collect it with your prior consent.
We may receive personal information which we did not ask for (i.e. unsolicited information). If this occurs, within a reasonable period of time we will determine whether we could have collected the information by seeking it from you. If we determine that we could not have collected that information from you, we will destroy the information or de-identify it where it is otherwise lawful to do so.
We may also collect information from time to time that is not personal information 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.
3. How and when does Eugene collect personal information?
We 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 reasonable steps 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:
during conversations between you and our staff (which includes paid employees and volunteers);
when you complete documentation;
when you participate in the services we provide or other research activities; or
through your access and use of our website.
4. For what purposes does Eugene collect, hold and use personal information?
We will only collect and/or use your personal information (including health information) to the extent that this is necessary for one or more of the following activities:
to provide services to you;
to verify your identity, respond to your requests or inquiries, or as otherwise directed by you;
to provide you with news, information and material in relation to services provided by Eugene, if requested by you;
to undertake medical research as consented to by you;
to undertake general research or other reasonably related research activities, including surveys and polls and other reasonably related research activities;
for the administrative, employment, planning, service development, quality control and research purposes of Eugene
to update our records and keep your contact details up to date;
to process and respond to any complaint made by you;
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 in Australia;
to promote programs and activities of Eugene, including fundraising, corporate philanthropy and education; and otherwise as permitted by law.
We only collect such personal information that we need for these primary purposes or for other (secondary) purposes that are related to a primary purpose. If we hold personal information about you that was collected for a particular purpose (i.e. one of the purposes listed above, being the primary purpose), we will not use or disclose the information for another purpose (i.e. a secondary purpose) without your consent, unless you would reasonably expect us to use it for the secondary purpose, or it is required by law.
In relation to the use of your personal information to provide you with information about our programs and activities, you may at any time request us not to provide you with any direct marketing and fundraising communications or publications. We will provide you with a simple means to opt-out of receiving such correspondence from us. You may elect to opt-out from receiving direct marketing and fundraising information at any time, by contacting us at the contact details below or, in the case of electronic correspondence, by selecting any unsubscribe option. Please note that you cannot opt-out of receiving contractual notifications such as changes to our terms and conditions for the supply of goods or services or other important information. In relation to sensitive information, we will not use or disclose this for the purpose of direct marketing unless you have expressly consented.
5. What happens if you do not provide us with the personal information we request?
You have the right to not identify yourself, including the right to not provide us with your personal information.
If you do not provide us with the personal information described above, 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.
6. How does Eugene securely hold your personal information?
Risks are mitigated through Eugene’s commitment to de-identifying or destroying any un-required personal information where possible.
You should be aware when using our website that no data transmission over the Internet can be guaranteed as totally secure. Although we strive to protect such information, we do not warrant the security of any information that you transmit to us over the Internet (including through our website or App), and you do so at your own risk.
7. Who can Eugene disclose your personal information to?
We may provide your personal information (including your health information), to:
our staff, which include our paid employees, volunteers and contractors;
our professional advisors;
our related bodies corporate, partners, affiliates, contractors and consultants who assist us in providing services to us and are required by us to protect your personal information;
Your care team – including doctors, allied-health professionals. These individuals will only be contacted if they referred you to Eugene of if you request your results to be shared with these individuals.
If a family member of yours contacts Eugene wanting support around genetic screening, we will not disclose your results to them unless you provide written consent.
any organisation for 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.
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.
8. Does Eugene disclose personal information to anyone outside Australia?
9. How can you access and correct your personal information?
You may request access to any personal information we hold about you at any time by contacting the Eugene Community Liaison Officer (see details in section 12 below). Where we hold information that you are entitled to access, we will take reasonable steps to provide you with suitable means of accessing it.
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.
We will take reasonable steps to ensure that any personal information that we have collected is accurate, up-to-date and complete. We will also take reasonable steps to ensure that any personal information we use or disclose is accurate, up-to-date, complete, and relevant having regard to the purpose of the use or disclosure.
If you believe that personal information we hold about you is incorrect, incomplete or inaccurate, then you may request us to amend it. We will consider whether the information requires amendment. If we agree, we will take reasonable steps to correct the information held. In some circumstances where we correct or update a record, we may still require retention of the original record. If we do not agree that there are grounds for amendment then we will add a note to the personal information stating that you disagree with it.
10. What is the process for complaining about a breach of privacy?
If you believe that your privacy has been breached, please contact the Eugene Community Liaison Officer (see details in section 12 below) and provide details of the incident so that we can investigate it.
We require any complaint to be made in writing first. We will then endeavour to respond to your complaint within 30 days. If we are unable to resolve your complaint to your satisfaction, a complaint can also be made to the Office of the Australian Information Commissioner.
12. Contacting us about an enquiry or complaint
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.
13. Locations of our international partners and research affiliates
Our international partners and research affiliates are located worldwide including, but not limited to: Invitae Corporation, San Francisco, CA, 94103
14. Contacting us