Biospecimen Services

Biospecimen Services offer two broad categories of services to researchers requiring biospecimens:

• for researchers seeking help in setting up and/or managing their own collections
• for researchers looking to access “ready to go”, annotated biospecimen cohorts from the Health Precincts Biobank.

Follow this flowchart to determine whether you require Biospecimen Services or the Health Precincts Biobank.

What specimens does the Health Precincts Biobank collect?
The Health Precincts Biobank collects biological specimens from any patients who have given written consent and who are undergoing treatment at Prince of Wales hospitals (public and private), St George hospitals (public and private), The Royal Hospital for Women and The Sutherland Hospital. Formerly a cancer biobank, the bulk of the current collection of specimens are from cancer cases. Typically, formaldehyde-fixed, paraffin-embedded (FFPE) blocks and plasma from peripheral blood samples are stored, as well as fresh tissue (for RNA/DNA extraction) when possible. A high-level search of specimens currently held by the biobank can be done through the online catalogue.

What ethics approval is required to use specimens from the Health Precincts Biobanks?
As patients have already given their consent for their banked biospecimens and data to be used for research, only ethical approval for the researcher’s own project is required. All specimens and data distributed by the biobank are deidentified, therefore ethics approval to use these is usually low or negligible risk. However, all researchers should seek advice from their home institution Research Ethics office (or equivalent) to confirm their ethics approval is appropriate.

What data is available with the specimens?
Typically, basic demographic data, clinical data from hospital records (including diagnosis and treatment details), and outcome data, are available for biospecimens. Data from patients’ Medicare Benefits Schedule (MBS) and Pharmaceutical Benefits Scheme (PBS) can also be made available. All data is supplied in a deidentified format.

If the Health Precincts Biobank does not have the specimens I need, can they get hold of them for me?
Unfortunately, the Health Precincts Biobank cannot collect specimens for specific researchers or specific projects. In this case, Biospecimen Services would recommend that the researcher establish an investigator-led (biobank independent) collection, with which Biospecimen Services can provide support. Details about investigator-led collections can be found here.

What does the Health Precincts Biobank charge for their Specimens?
The Health Precincts Biobank operates on a cost-recovery basis. A quote is provided to all applicants before specimens are distributed. A guide to costs can be found here.

I‘m a non-UNSW researcher can I still access specimens from the Health Precincts Biobank?
Yes, all researchers with HREC approval for their study can request specimens through the Health Precincts Biobank.

What is the Health Precincts Biobank?
The Health Precincts Biobank (previously known as the Health Science Alliance (HSA) Biobank) is an initiative of UNSW Biospecimen Services and is a collaboration between UNSW Sydney and NSW Health Pathology.

Who can consent to the Health Precincts Biobank?
People being treated for a range of diseases at the Prince of Wales Hospital, Royal Hospital for Women, Prince of Wales Private Hospital, St George Hospital, St George Private Hospital and the Sutherland Hospital may be offered the opportunity to consent to the Health Precincts Biobank. One or more of the following biological specimens; tissue, blood, urine, fluid, saliva and/or mouth swab samples, along with accompanying personal and health information including non-identifiable scans, can be collected from patients who provide written consent.

To be eligible to participate, you must be 15 years or older, and attending a participating hospital. You will be required to understand and sign a consent form or have a guardian/carer sign it on your behalf.

What does consent involve?
Participation in the Health Precincts Biobank is incorporated into your routine medical care. For example, if you consent you may also be asked to provide a blood sample that can be collected during a routine blood test. If you are not due a blood test, you may be asked to provide a saliva sample or a small swab from inside your cheek. In some cases, urine and fluid samples are also collected. Once your procedure and diagnosis are completed, a pathologist will be able to reserve a small sample of any tissue not required for diagnosis to be stored in the Health Precincts Biobank.

What other health information will be collected?
The Health Precincts Biobank consent form will ask whether you give permission for access to extra information about your medical history such as your hospital medical records, and other health data collections of your past and future health. This information, paired with your samples will be deidentified prior to distribution to help researchers answer a wide range of research questions. 

How can I be sure that my privacy will be protected?
Research is never conducted using information that names individuals. Your samples and data will be given a unique code and your name and other identifying information will be removed to ensure your privacy is maintained. 

Do I have to take part in the Health Precincts Biobank? 
Participation in all aspects of the Health Precincts Biobank is voluntary. You can say no to participation, and if you choose to participate you can withdraw your consent at any time if you change your mind. If you withdraw your consent, your samples and personal health information held by the Health Precincts Biobank will be destroyed. It will not be possible to remove materials from the Health Precincts Biobank that have already been used for research.

Choosing not to consent to the Health Precincts Biobank will not have any impact on your current and future medical treatment or your dealings with Medicare Australia. 

If you wish to withdraw your samples and data from the Health Precincts Biobank please contact us by email HealthPrecinctsBiobank@unsw.edu.au or phone (02) 9065 5665

Will I be contacted again?
Once you have consented to the Health Precincts Biobank, you will not usually be contacted again and your signed consent form or a record of your participation is kept securely. If you are approached in the future to consent to the Health Precincts Biobank, simply tell your doctor or nurse that you have already consented. There is no problem with re-consenting to the Health Precincts Biobank at a later date.

What will happen to my samples and health data once they’ve been collected?
Your samples and data will be stored within Biospecimen Services at UNSW Sydney. Your name and identifying information will be removed to protect your privacy when samples and/or data are given to researchers.
Samples and data will be used for research and education purposes. Only researchers with projects that have been approved by a Human Research Ethics Committee can apply to access these samples and data.
Research will examine causes of disease, prevention, diagnosis, treatment and genetics. Education will involve teaching medical, science and nursing students.

How long will my samples and information be stored in the Health Precincts Biobank?
The samples and data in the Health Precincts Biobank can be kept indefinitely or until requested for ethically approved research.

Why does the Health Precincts Biobank want access to my Medicare and PBS records?
Medicare and PBS records provide helpful information about visits to health professionals, tests, and prescription medicines. This information is not always available through hospital records. This allows researchers to answer important questions about use of treatments and health services in the community, and to contribute to better patient care.

You can choose not to give the Health Precincts Biobank access to these records. This will not impact your medical care, your dealings with Medicare Australia, or your ability to donate tissue to the biobank.

What is a Collection Protocol?
A Collection Protocol is an investigator-led collection, managed with the assistance of UNSW Biospecimen Services; the term ‘Collection Protocol’ refers to the management of the collection within ‘OpenSpecimen’, the Laboratory Information Management System (LIMS) used by Biospecimen Services. A Collection Protocol is a standalone, often study-specific collection, independent of the Health Precincts Biobank.

Investigator-led studies
Request for collection and processing of samples for research studies.

What's the difference between a Collection Protocol and accessing specimens through the Health Precincts Biobank?
A Collection Protocol is an ongoing accrual and storage of specimens, undertaken by a Primary Investigator (PI) in association with the Biospecimen Services. A Collection Protocol has defined specimen collection groups, time points and a predetermined specimen type and processing protocol.
A Health Precincts Biobank specimen request for stored, ‘ready to use’ biospecimens can be submitted to Biospecimen Services by any researcher with HREC approval for their study. This is a one-off request that is subject to approval by the biobank Research Access Committee.

What kind of ethics and governance approval do I need?
For investigator-led studies the Primary Investigator of any Collection Protocol is responsible for obtaining HREC and governance approval, for both the collection and the use of specimens prior to the commencement of specimen collection. Biospecimen Services can offer support and guidance for these HREC applications.

Who reviews my Collection Protocol requests?
Your Collection Protocol will be developed by the Biospecimens Services team to match your specimen requirements and conform to ethical constraints; as the PI, you will have final sign off on the Collection Protocol prior to specimen collection commencing. , A portion of your samples (2% of any given Collection Protocol) may be included in an internal Biospecimen Services audit; you will be notified prior to this and given the option to not participate.

Can other researchers access my biospecimen collection?
Biospecimen Services will not give out specimens from your collection without your approval. Any requests for specimens will be forwarded to you as the PI of the Collection Protocol for review and approval prior to potential specimen distribution. Any distribution of specimens to other parties must comply with the ethical approval under which the specimens were originally collected and have ethical approval for use. Biospecimen Services are able to work through this process with PIs and provide UNSW-approved template documents such as Material Transfer Agreements, for this purpose.

What does Biospecimen Services charge for its services?
Biospecimen Services works on a cost recovery basis to cover our costs for maintaining samples and services. Please email Biospecimen Services for more information: BiospecimenServices@unsw.edu.au.

How do I access my biospecimen data?
Biospecimen data is stored on a secure database called OpenSpecimen. De-identified data for your samples can be accessed through the online portal. Once you commence your Collection Protocol with Biospecimen Services you will be provided with a login and training on the database.

What does OpenSpecimen do?
OpenSpecimen is the database used by Biospecimen Services to manage their collections of samples, derivatives and aliquots. It is a secure platform for storing annotating data such as patient information linked to biospecimens, it manages biospecimen processing workflows and is a freezer management system.

How do I access OpenSpecimen?
The UNSW instance of OpenSpecimen is accessed through a web portal. You will be supplied with a login by Biospecimen Services when you commence a collection. Your login will only enable you to view/edit the collections you have ethical approval to view.

Where is the data in OpenSpecimen stored?
Data entered into OpenSpecimen, including Patient Health Information, is stored on secure UNSW servers which are managed by UNSW IT.

Can I add another staff member as a user to OpenSpecimen?
All user approvals need to be enabled by Biospecimen Services. New users who require access can request this through the sign up page.

Is there an on-line help feature users can access?
There is an on-line help feature available for the UNSW instance of OpenSpecimen. It is accessed through the  symbol visible on the blue bar to the top right of screen once you log into the system.

Who do I contact if I have a problem using OpenSpecimen?
If you have any questions about your access or use of OpenSpecimen please contact Biospecimen Services (BiospecimenServices@unsw.edu.au).