Menzies Institute for Medical Research Privacy Statement
Menzies is committed to the highest legal and ethical standards in the management of personal information of research participants, donors and other individuals. In dealing with participant personal information, Menzies is conscious of its state, national and international responsibilities for individual privacy protection.
This Privacy Statement outlines Menzies privacy obligations; informs individuals of the manner in which Menzies collects, uses and discloses personal information; ensures that Menzies maintains high standards in privacy and confidentiality across all areas of its operations; and compliance with the:
- Tasmanian Personal Information Protection Act (2004);
- Commonwealth Privacy Act (1988) where Menzies agrees to comply with that Act in a contract; and
- National Statement on Ethical Conduct in Human Research (2007).
What is the Tasmanian Personal Information Protection Act 2004?
The Tasmanian Personal Information Protection Act (2004)is the relevant legislation regulating privacy protection within Menzies. This Act regulates the collection, maintenance, use and disclosure of personal information relating to individuals.
What is Privacy?
Privacy is the right of individuals at their option to be left alone and for their personal information to be kept private and undisclosed. As such this right is protected by law. Menzies is a leading Tasmanian research organisation that must ensure the high standards of ethics and privacy at all times. Menzies must set high standards for itself and be an example to others.
What does “personal information” mean?
As defined in the Personal Information Protection Act (2004), personal information is any information or opinion in any recorded format about an individual whose identity is apparent or
is reasonably ascertainable from the information or opinion; and who is alive or has not been dead for more than 25 years. Personal information can be of low significance, such as
someone’s email address, or it can be significant and highly sensitive such as someone’s income or medical history.
Menzies collects personal information from a range of individuals by lawful means. These details may include:
- Date of birth;
- Marital status;
- Address (current and previous);
- Telephone number;
- Mobile telephone number;
- E-mail address.
For financial supporters and medical services clientele, personal information includes:
- Bank account or credit card details.
For study participants, personal information includes:
- Any other personal information including information about lifestyle, medical history or family history. This may include Sensitive Information. Please refer to the Personal Information Protection Act (2004).
Menzies will disclose personal information to staff members, students, volunteers and associates who require that information for the performance of their duties. The personal information that Menzies collects from individuals such as research participants and donors will not be disclosed to any third party, except where required by law. Your personal information will not be used for any direct marketing or any other mail-out.
How is personal information used by Menzies?
Menzies will only use the personal information it collects for the purpose for which it was collected unless Menzies obtains additional consent from the individual to use the personal information for another purpose.
Menzies uses personal information, which it gathers for undertaking research activities, community engagement, fundraising, business with its clients and stakeholders, and in its other operations. This information may be used in any one or more of the following ways:
- To carry out research activities to improve understanding of the causes, prevention and treatment of disease;
- To provide a range of medical services;
- To engage with our community and solicit support for Menzies; and
- To gather information which will permit Menzies to better understand the needs of our community.
It is important that any information collected is necessary for what Menzies does and that once Menzies has this information the records are kept safe, are updated when the information is found to be wrong or inaccurate, and that Menzies destroys it when no longer needed.
If Menzies is passing personal information on to a third party, Menzies must know that the person or organisation is entitled to receive it; that the information is transferred securely; and wherever possible and when ethically required, Menzies has informed the person to whom it belongs of its release. Menzies will only disclose the personal information where consent is obtained to do so.
Research conducted by Menzies and involving human participants must comply with the National Statement on Ethical Conduct in Human Research (2007). Where it involves the collection or use of individually identifiable or re-identifiable data it must have the approval of a Human Research Ethics Committee.
Menzies will gain the consent of all study participants in accordance with ethics approval for each project. Information collected and the use of that data will be in accordance with the terms of the consent and ethics approval. All study participants will receive a copy of this document.
Storage and security of personal information
Menzies will take reasonable steps to ensure that it keeps personal information in a secure environment to protect from misuse, disclosure and unauthorised access. Menzies will only dispose of personal information in accordance with the disposal schedules maintained under the Tasmanian Archives Act (2003). Menzies will not store personal information outside of Australia.
Accessing and changing personal information
Menzies will take reasonable steps to ensure that all personal information collected and stored is up to date, accurate and complete. Individuals may at any time request access to their personal information that has been collected and may obtain a more in depth explanation about how the information is used by contacting Menzies.
If a request to access personal information by the individual is refused, the individual may make an application for access to information under the Right to Information Act 2009 (Tas).
Privacy complaints resolution
Menzies is committed to providing a fair and responsive system for handling and resolving complaints. Individuals have a right to complain and to have the complaint handled efficiently.
Should any complaint be received, either in person or by telephone or in writing, the matter shall be immediately referred to the General Manager for investigation and/or action in accordance with this Statement and the requirements of the Personal Information Protection Act. Advice on complaints about the conduct of human research or the handling of research data may also be directed to the Human Research Ethics Committee.
Dissatisfaction with Menzies response?
If individuals are not satisfied with the result of the complaint sent to Menzies, it can be referred to the Ombudsman:
Telephone: 1800 001 170 (free call nationally)
In Person: NAB House
Level 6, 86 Collins Street, Hobart
In writing: GPO Box 960, Hobart TAS 7001
Complaints about the conduct of research or use of human research data can be referred to the Human Research Ethics Committee:
Telephone: (03) 6226 6254
In writing: Human Research Ethics Officer
University of Tasmania
Private Bag 01
Hobart TAS 7001
For further information, contact the Menzies General Manager:
Telephone: (03) 6226 7701
In Writing: General Manager
Menzies Institute for Medical Research
Private Bag 23
Hobart TAS 7001