1.2 This policy describes the way that we collect, hold and disclose information about individuals. We are subject to the Privacy Act 1988 (Cth) and relevant Australian State and Territory laws, including the National Privacy Principles. We may vary this policy from time to time.
2.1 The National Breast Cancer Foundation (NBCF) has established a national web-based voluntary register 'Register4' (Register4) of people who are interested in considering requests to participate in breast cancer research and other health and medical research. All women and men aged 18 years and up are eligible to register as Members (Members).
3.1 To provide a unique national research resource that will contribute to saving lives by accelerating our understanding towards the prevention and cure of breast cancer and other health issues
3.2 To engage significantly more Australian women in breast cancer and other health and medical research;
3.3 To create a significant database to facilitate more extensive and effective research;
3.4 To increase the NBCF's engagement and influence with government, researchers, corporate sector and the community on the subject of research.
4 What information do we collect and hold?
4.1 During the course of carrying on our business and conducting Register4, we may collect personal information.
5 Visiting the Website
5.1 You may visit the Website without indentifying yourself or revealing your personal information.
5.2 As you browse through the Website we may collect de-identified data in relation to:
5.2.1 The type of browser used by you;
5.2.2 The date and time of your visit;
5.2.3 The pages you visited;
5.2.4 The address of the website that referred you if you entered the Website via a link.
6.1 Anyone aged 18 years and up may choose to register as a Member.
6.2 People will self register and provide minimal demographic information such as:
6.2.3 date of birth;
6.2.4 address and contact details;
6.2.5 if you are Aboriginal or Torres Strait Islander origin;
6.2.6 country of birth;
6.2.7 your parent's country of birth;
6.2.8 general health information; and
6.2.9 whether or not you are a twin.
6.2.10 You may wish to provide to us contact information for a nominated secondary contact should we be unable to contact you through the information supplied during registration. You must obtain consent from your nominated contact person to use and disclose their personal information before supplying it to Register4.
6.3 Following registration, Members will be invited to complete a Health and Lifestyle (Epidemiological) Questionnaire (Epi Data). This may include questions concerning:
6.3.1 your health;
6.3.2 your lifestyle; and
6.3.3 your family health history;
6.4 Following formal approval by the Register's Access Committee, Epi Data will be supplied to researchers and other registers or studies with all identifying information removed. If it is necessary to have identifying information attached to your Epi Data, you will be asked to consent before the information is released.
6.5 Members will receive periodic communications via email from Register4 about research in general and approved research projects that they may be interested in contributing to. If interested, Members will confirm this with Register4 and we will forward the Member's contact details to the relevant Researcher. No names of Members interested in particular research requests will be forwarded to Researchers without approval. Members may also receive progress reports and updates on the research offered through Register4.
6.6 During registration Members may also elect to receive the Register4 newsletter as well as communication from the National Breast Cancer Foundation (NBCF) about their research and general activities. Members may opt out of their subscription to the Register4 newsletter and other NBCF communications at any time.
6.7 In the future, the Register may develop linkages with other national and international research registers and cohort studies that collect epidemiological data and/or bio specimens (blood/tissue samples).
6.8 You agree to provide to us current, correct and accurate information.
6.9 You may choose to exit your involvement in Register4 as a Member at any time. We will then deal with your personal information according to your preference selected at the time of cancellation from the Register within seven days of your email. We may keep a copy of old versions of the Register for historic quality assurance purposes.
7.1 Researchers who wish to utilise Register4 to recruit participants to their research or to use de-identified data for research will provide the following information:
7.1.2 contact details;
7.1.3 information about their area of research;
7.1.4 summary of approval of studies, for example by a Human Research Ethics Committee;
7.1.5 information about their funding application and who is funding the study;
7.1.6 study progress updates; and
7.1.7 final report on the research and publications and presentations.
7.2 The information we give about Researchers to Members includes information about the research project, the Researcher's name and contact details, research institute and summary of research study.
7.3 We will also disclose information concerning the Research and the research project to our Access Committee and as necessary the Register4 Sub-Committee of the NBCF Board, and the Board itself.
7.4 You agree to provide to us current, correct and accurate information. You may choose to exit your involvement in Register4 as a Researcher at any time. We will then remove your research project from the Register within seven days of your email. We may keep a copy of old versions of the Register for historic quality assurance purposes. However, once a Researcher commences an approved access protocol they will be subject to the conditions of the associated contract they enter into with Register4.
8.1 If you consent to be a Champion for Register4 by agreeing to assist with promotional activities, events or other types of promotions of Register4, we may disclose your name and the fact that you have agreed to be a Champion for Register4.
9 Use and disclosure of your personal information
9.1 We use your personal information for the purposes for which it was collected and related purposes (which are normally obvious when we collect it), including:
9.1.1 as explained above;
9.1.2 to manage the Register;
9.1.3 manage our relationships and our communications with you;
9.1.4 monitor outcomes for users of the Website;
9.1.5 to communicate issues or opportunities regarding Register4;
9.1.6 to communicate with you about Register4 from time to time; to analyse trends and demographics to assist us to improve Register4, and
9.1.7 facilitate our internal business operations, including to fulfil our legal requirements, quality assurance and management purposes.
9.2 We may disclose personal information for the purposes for which it was collected, and also:
9.2.1 subject to our professional obligations, to any person where necessary in connection with our provision of our services;
9.2.2 subject to our professional obligations, as permitted under privacy laws.
9.3 If we report on the Website, including under our funding arrangements, we will report on a de-identified basis unless we obtain your written approval.
9.4 We may pass on any information relating to suspected fraudulent or unlawful activity to appropriate authorities.
9.5 We do use various details to verify information given to us by you. At times, we use:
9.5.1 phone numbers and email addresses to communicate with you; and
9.5.2 name, address and date of birth
9.5.3 All information is otherwise kept private.
10 Protection and security of information
10.1 We take reasonable steps to protect all information which we hold (including your personal information) from misuse, loss, unauthorised access, modification or disclosure.
10.2 Information contained on the Website is protected by encryption and firewall
10.3 We take reasonable steps to hold information securely in electronic or physical form. We store information in access controlled premises or in electronic databases requiring logins and passwords. All staff with access to confidential information are subject to confidentiality obligations.
10.4 The steps we have taken to protect your personal information include:
10.4.1 we only ask you for personal information if we need it;
10.4.2 we are not involved in the selling, trading or the unauthorised use of personal information; and
10.3 You should sign out or close your browser once you have finished using the Website. This is to ensure that others cannot access your personal information and correspondence.
11 What are Cookies?
11.1 Cookies are alphanumeric identifiers that are placed on your computer's hard drive through your web browser. Cookies enable our systems to recognise your browser and welcome you back to the Website.
11.2 By disabling cookies, you will not be able to participate in some of the features offered by the Website.
11.3 Most Internet browsers are pre-set to accept cookies. If you prefer not to receive cookies, you can adjust your Internet browser to disable or to warn you when cookies are used. As there are many browsers in the marketplace, the easiest way to change your settings is by searching for Cookies in your Help/Contents and Index option on your browser.
11.4 We recommend that you leave your Cookies enabled otherwise you may not be able to use the Website to its full extent.
11.5 Our cookies don't send us back any information about your computer or any other information on your hard drive.
12 Access and complaints
12.1 You may request access at any time to personal information that you provided to us.
12.2 Personal information provided by you can be updated by you if information provided is incorrect or out of date.
12.3 If you wish to access your personal information or make a complaint about a breach by us of your privacy, you can contact us on 1300 709 485 between 9am - 5pm AEST Monday to Friday (excluding public holidays) or email us from the 'contact us' option on the Website.