Frequently Asked Questions 

These FAQs are designed to provide additional information for biobanking 
participants. They should be read together with the Participant Information Sheet. 

Taking part and background to the Australian Health Biobank 

Why am I being invited 
to take part? 

You are being invited to participate in the Australian Health Biobank because you are 
aged 18 years or older and taking part in the National Health Measures Study (NHMS) 
being conducted by the Australian Bureau of Statistics (ABS). As part of that study, 
you have been asked to voluntarily supply a blood sample and a urine sample. We are 
now asking if you would also agree to voluntarily donate an extra blood and urine 
sample to the Australian Health Biobank. 

What is a biobank? 

A biobank is a collection of human biological samples or ‘biospecimens’ (e.g. blood 
and urine) and/or their products (e.g. DNA). Like a bank, samples donated for 
health and medical research are kept under tight security and in carefully 
controlled conditions. 

Samples are stored securely, together with samples from many other people like 
yourself, for use in ethically approved health and medical research projects, now and 
into the future. 

This bank of samples will be made available to researchers from across Australia to 
conduct new research to help support the health and wellbeing of Australians. 

Research is an important part of our health care system. Across Australia, our 
researchers contribute to discoveries that help us lead longer, and healthier lives. 
The biobank will support research by providing researchers with access to a national 
collection of biological samples from the Australian population – making health and 
medical research easier and quicker. 

What are the benefits 
of participating? 

Your choice to donate a sample and allow access to your health and personal 
information will support research that could result in discoveries that could change, 
improve and save lives in the future. It is not likely you will benefit directly. 







Donating a sample

How and when is my 
sample taken? 

If you choose to participate in the Australian Health Biobank, you will be asked 
to attend a second appointment at a Sonic Pathology Australia collection centre 
(after the appointment when your get your samples collected for the NHMS). 

At this appointment, you will be asked to donate blood (approximately 20 ml or 
1 tablespoon) and urine (approximately 10 ml or 2 teaspoons) to the Biobank. 

If you agree, some of the blood sample will be used to isolate a sample of your DNA. 

What happens to my 
sample after it is taken? 

Your samples will be sent from the pathology collection centre to a central processing 
laboratory, where they will be transferred into tubes that are specially designed for 
long-term storage. Your samples will be labelled with a unique code and won’t have 
any information on them that could identify you (like your name or address). 

From the central processing centre, your samples will be sent to a high security, 
well‑established storage facility for long-term storage. This facility is set up to 
ensure the samples remain safe and in the highest quality condition. This facility 
meets international security and safety standards for managing biological samples. 
This facility will store your samples on behalf of the Australian Health Biobank. 
They will only be able to access your samples when they are authorised to do so, and 
the samples will only be used in a way that the Australian Health Biobank approves. 

Your samples will be made available to researchers for research projects, now and 
into the future (see FAQ section below on Research Projects). 

You can choose to withdraw your consent and donation at any time. If you decide 
to stop taking part, your sample would be removed from the Biobank and destroyed 
(see FAQ section below on Withdrawal of Consent). 

How long will my samples 
and information be kept? 

Your samples and information could be held indefinitely (or until you choose to stop 
taking part). 

Will I be paid for my 
samples and their use 
in research projects? 

No. Your decision to take part in health and medical research is voluntary and you 
will not receive any payment for your donation to the Australian Health Biobank. 

It is possible that research from your samples could be used by researchers or 
a company to develop a test or product that they make money from. If this happens, 
neither you nor the Australian Health Biobank will benefit financially (See answer to 
FAQ below: Will commercial researchers be able to access my samples and data?) 

Do I get a say in what 
happens to my samples 
e.g. if I withdraw or if the 
biobank closes down? 

You are donating your samples to the biobank, and the Australian Health Biobank 
is responsible for looking after these samples while they are in the biobank, and 
disposing of them in accordance with any religious, cultural or other requirements 
that you may have when they are no longer needed or if you decide to withdraw 
consent. We will ask you about any such requirements at the time you withdraw or if 
the biobank closes down for any reason. 







Withdrawal of consent 

I’ve changed my mind. 
How do I withdraw 
my consent? 

Your participation is voluntary. If you choose to take part now, you can change your 
mind later and withdraw your consent at any time. You can stop participating at any 
time and for any reason. 

You can withdraw by contacting the Biobank custodian (CSIRO) on 1300 363 400 
or email biobank@csiro.au. These contact details will also be available in a regular 
participant newsletter and on the Australian Health Biobank website. 

As an Australian Health Biobank participant, you will also be given a unique code for 
a page only you can access where you can easily 

• manage your consent status (including withdrawal), 
• update your contact details or any other information and 
• see if your samples have been used for any research projects. 


In addition, a withdrawal of consent form will be available on the website that will be 
set up specifically for the Australian Health Biobank and regularly updated. The form 
can be completed by you either online or by printing out the form. You can choose to 
withdraw from all or different parts of the biobank, for example genomic research. 

What happens to my 
samples and information if 
I withdraw my consent? 

If you choose to stop taking part, the samples you donated will be removed from 
the Australian Health Biobank and destroyed using standard clinical procedures. 
Participants will be asked at the time of withdrawal whether there are any cultural 
or other requirements in relation to their sample. If there are, we will do our best 
to ensure your sample is destroyed in accordance with these requirements and will 
discuss this with you if there are any problems meeting them. 

If you choose to stop taking part, we will ask that any results from research that has 
already been done on your samples is retained in the Australian Health Biobank data 
repository, but you can request that all such information is removed if you wish. 

At the time you let us know you would like to withdraw your consent your sample 
might have already been given to a researcher and used for a project. They will be 
asked to destroy this sample if it has not already been used for their research. 

It is important to note that you cannot withdraw your information from research that 
has already been published. Information already sent out of the Biobank for research 
also may not be able to be recovered. 

When you withdraw your consent, the code that enables us to re-link your samples 
and personal information will be deleted so that no further information about you 
will be collected. Only your signed consent form and a copy of the letter confirming 
your withdrawal will be kept as a record of your wishes. Such a withdrawal will 
prevent information about you from contributing to further research and analyses. 







Research projects

What can my samples 
and information from my 
samples be used for? 

Your sample and results from analyses done on your samples can be used for many 
different types of health and medical research. For example, it could be used to help 
develop better treatments for people living with heart disease and help improve our 
understanding of risk factors. 

Some examples of research that could be conducted using your samples or 
information from your samples could include: 

• Measuring the levels of a particular micronutrient or environmental toxin in 
the population 
• Working out whether there are particular characteristics that make people more 
likely to get particular diseases 
• Determining if particular genes can affect how people respond to a specific drug 
or treatment 
• Determining the link between alcohol intake and risk of diseases at a 
population level 
• Looking at whether there are particular blood or genetic markers that make 
people more at risk of infectious diseases, including COVID‑19 


Will I be told what research 
projects my sample and 
information are used for? 

You will not be told directly what research projects are using your samples or results 
of analyses done on your samples. 

However, as an Australian Health Biobank participant, you will be given a unique 
access code for a website page only you can access. From this website you can 
easily manage your consent status (including withdrawal), update your contact 
details or any other information and see if your samples have been used for any 
research projects. 

A list of research projects accessing samples in Australian Health Biobank and 
publications from this research will also be made available at csiro.au/biobank. 

Do I get a say in what research 
projects my samples and 
information are used in? 

Generally no. By making a decision to donate your sample, you are consenting for 
your samples to be used for a range of health and medical research projects that have 
been approved by the Australian Health Biobank and a registered ethics committee. 

However, in the future researchers may ask the Australian Health Biobank to contact 
you on their behalf so they can ask if you want to participate in a research project 
that may require additional samples or health information to be collected. You can 
choose at the time you are contacted whether you want to participate in these 
projects. You can also decide that you don’t want to be contacted about these types 
of projects in the future. 

Do I get to hear about 
the research results? 

Reports or papers that describe general research results, meaning combined results 
generated from the analysis of biobank samples and/or information from these 
samples, will be made available to participants, researchers, and any other people 
who might be interested through the Australian Health Biobank website. 

You generally won’t be given your individual results (results from the analysis of your 
own samples). 







DNA, genomic testing and research

What is DNA and 
genomic testing? 

Genes are the basic “instruction book” for the cells that make up our bodies. 
All genes are made of DNA. The complete set of DNA in your body, including all its 
genes, is called your genome. Although our DNA is very similar to each other, your 
DNA is entirely unique. Until recently, doctors and scientists were only able to test 
one gene at a time. Genomic technology allows researchers to test many genes at 
once (genomic testing). 

What is genomic information? 

This is a specific type of research data generated by researchers based on analysing 
your blood samples for information on your DNA, or genomic testing. 

Will I be given my 
genomic information? 

You will not receive a copy of your individual genomic information by making 
a donation to the biobank. But we may contact you if researchers find something 
from your genomic analyses that could have serious implications for you or your 
family (see FAQ section below on Serious Findings). 

How will my DNA and 
genomic information 
be used in research? 

By linking the genomic information to health data, researchers may be able to look 
at whether there are particular genetic markers (collections of genes) or mutations 
that are linked to health measures (such as body weight or height) or risk of certain 
diseases. This type of research can help understand why some individuals are more at 
risk of particular diseases and help to develop better screening programs and more 
personalised treatments. 

The Australian Health Biobank will work with the ABS to enable researchers to 
undertake data linkage (See FAQ section below on Linking Information from your 
Samples to Health and Other Information). 

Only Australian researchers will be able to link genomic information to other health 
information, and this will need to be approved by the Australian Health Biobank 
Steering Committee and Science and Technical Advisory Committee. 

Given that the impact of genomic information may change over time as new 
knowledge is gained, we cannot specify at this stage what type of research will be 
undertaken. The sorts of genomic research that happens today includes: 

• Developing screening tests to determine if you are at higher risk of a particular 
cancer (like the BRACA gene for breast cancer) 
• Tests to determine which treatment option (for example type of chemotherapy) is 
most likely to benefit a particular patient 
• Determining whether you have a risk of developing high blood pressure or high 
cholesterol, so that diet and lifestyle changes or other treatments can be started 
earlier and stop serious disease from developing 
• Screening babies to see if they have any genetic disorders that could be treated 
from birth to reduce the long term impacts (neonatal screening) 








DNA, genomic testing and research

Can I be identified from my 
genomic information? 

Your sample and genome information will not be labelled with any details that could 
identify you (like your name or address), and instead this will be replaced by a unique 
code. We will keep the link between this code and information that could identify 
you separately with only a few people able to access it to ensure only people who are 
allowed to can tell which sample and what information is yours. 

Your coded information and sample will only be shared when safeguards are in 
place to protect your privacy. Personal identifiers will be removed (including your 
name, contact details and address) and stringent security measures will prevent 
unauthorised access or misuse. Data sharing will also involve the minimum, 
necessary information so researchers don’t get more information than they need to 
do their research. 

Genomic information alone is not sufficient to identify a person. It needs to be 
matched with personal information available from other sources for that to happen. 
However, because your genomic information is unique to you there is a possibility 
that it could be used to identify you. To minimise the risk of this occurring, we 
will ask researchers who want to access your genomic information to agree not to 
attempt to identify who you are and to handle your genomic information carefully so 
that your privacy is protected. 

Do I get a say if I want my 
samples to be included 
in genomic research? 

You may choose whether your samples are available for genomic research at the time 
of signing the Australian Health Biobank consent form. 

You will also be able to withdraw your consent for genomic analyses at any time. 
Withdrawing your consent for genomic testing does not affect your participation in 
other research projects that do not collect genomic information. 







Serious findings from genomic research 

What are serious findings? 

Very rarely when genomic tests are done on donated samples, a potentially serious 
and important piece of information can be discovered. For example, a change in your 
DNA could indicate a higher risk of a heart problem. This DNA might be something 
you share with your genetic relatives, such as your parents, siblings or children. 

In the consent form, we ask you to agree to be contacted by your doctor or other 
nominated health professional about a potentially serious finding. 

You would only be contacted about potentially serious findings if they meet each of 
the following criteria: 

• Significant: The finding indicates a potentially life-threatening health condition or 
affects your reproductive health. 
• Actionable: There are specific established treatments or other available actions 
that might help you. 
• Confirmed: The finding has been checked as accurate and/or valid, as far as 
reasonably possible within a research context and to current best knowledge. 


General health information collected during research projects, such as evidence of 
increased risk of high cholesterol or diabetes, will not be returned. It is important to 
continue your regular health check-ups with your family doctor. 

How and when will I be told 
about serious findings? 

In the rare event that a potential serious finding is discovered, the matter would be 
referred to clinical experts. 

If the clinical experts determine that the potential serious finding is significant, 
actionable and confirmed, they would inform your doctor or healthcare professional 
(who we will ask you to nominate when you sign the consent form). 

The nominated clinician would contact you to tell you that a potential serious finding 
might exist and you may be referred to a medical expert or genetic counselor.

Why am I being contacted 
about a serious finding? 

You are being told about a potential serious finding, as this knowledge could give 
you early access to information that helps you understand or protect your health and 
wellbeing, or the health and wellbeing of your family. 

Could taking part impact my 
ability to take out health or 
life insurance in the future? 

In rare cases, taking part in health and medical research might affect health or life 
insurance cover for you and your blood relatives. For example, if you have a serious 
and life-threatening genetic condition that you share with your family, it could affect 
insurance you apply for in the future (for example life insurance or income protection). 
A fact sheet is available at fsc.org.au/resources/1785-moratorium-key-facts 

You are encouraged to seek specific advice from your doctor and/or your insurer if 
you’re concerned about the impacts of taking part in the biobank.

What if I don’t want to be 
told about a serious finding? 

If you are contacted about a potential serious finding, you may choose not to be 
told the details. You can change your mind about being contacted at any time after 
you consent by contacting us or visiting the Australian Health Biobank website 
(csiro.au/biobank). 

Even if you don’t agree to be told details about your serious finding, in rare cases 
your doctor may contact your family members if there is a serious and imminent 
threat to their health. 







Linking information from your samples to health and other information 

What is data linkage? 

‘Data linkage’ is a method of bringing together information from different sources 
about the same person. For the Australian Health Biobank, this would involve linking 
the results of analyses done on your samples to data about your health or other 
information that describes who you are (in general terms, like your age or the broad 
area you live in, but without identifying you). This health and other information 
would come from the surveys run by the Australian Bureau of Statistics (ABS) and 
information from other government agencies (e.g. on education) and is held by the 
ABS. For more information on the ABS’ data integration program, including how the 
ABS keeps your information safe and secure, and protects your privacy, please see 
abs.gov.au/about/data-services/data-integration. 

As part of agreeing to be involved in the Australian Health Biobank, you provide 
consent for the results obtained from your samples to be linked to this other 
health information. 

Why is data linkage 
important for health and 
medical research? 

Data linkage helps researchers to better understand health and healthcare over the 
life course. 

When combined across numbers of people, this linked data can provide researchers 
with a valuable resource that helps them to investigate and improve the way disease 
is detected, diagnosed and treated. 

Linked data can help us to understand how lifestyle, medications, treatments, genes 
or other factors might affect the future health in the population. It can also help to 
improve the delivery of healthcare, develop future treatments and provide insights 
into why some people are more susceptible to disease than others. 







Linking information from your samples to health and other information 

What type of health‑related 
data will be linked 
to my sample? 

Your health is influenced by many factors – including your own behaviours, your 
biology and genes, your lifestyle and environment and your engagement with 
the health system. This type of information is referred to as health-related data in 
this document. 

Researchers will be able to apply to link the results of analyses on your samples to 
a range of health and administrative information that is held by the ABS: 

1. Information from ABS surveys, such as the National Nutrition and Physical 
Activity Survey: This could include information like: 
– Core Health Information 
– Dietary recall 
– Physical and sedentary activity (objective and self-report) 
– Sleep 
– Breastfeeding 



2. General National Health Measures Study Information: The results of analyses of 
samples collected in the National Health Measures survey 
3. Other health Information: This includes data that comes to the ABS from a range 
of health-related national databases, including: 
– Pharmaceuticals Benefits Scheme 
– Medicare Benefits Schedule claims 
– Centralised Register of Medical Practitioners 





Information here could include things such as the number of visits times to your 
family doctor (based on) or the prescription medicines you get from a pharmacy 
(based on Pharmaceutical Benefits Scheme claims) 

4. Information that describes who you are (without identifying you individually): 
This includes things like your gender, age or age group, metro vs rural, 
education, state your live in etc. This could include information held in national 
databases including: 
– Total Vocational Education and Training activity 
– Apprentice and Trainee, Higher Education 
– Australian Early Development Census 
– Migration, Data Exchange 
– Australian Tax Information 
– Medicare Consumer Directory 
– Centrelink Administrative Data 
– Census Data 
– Death Registrations 





Data linkage will only be used for research that will contribute to the health and 
wellbeing of Australians. Data will not be used for compliance or monitoring purposes. 

It is important to know that the ABS operates under extremely strict privacy and 
security guidelines around protecting these data so that it can’t be used to identify you. 
Part of this protection is that all personal information that could be used to identify use 
(like your name and address) is removed from the data held in the ABS and replaced with 
a unique code. 







Linking information from your samples to health and other information 

How does data linkage work? 

For all data that is held by the ABS (wherever it comes from) the identifying 
information (your name) is deleted and replaced with a code that is unique to 
you. The means that the ABS knows that information from different databases and 
different sources came from the same person but have no way of knowing which 
person that was. In other words, researchers will not be able to identify you as 
a result of undertaking data linkage. 

The results of analyses done on your samples that are held by the Australian Health 
Biobank are also identified by a unique code. 

The Australian Health Biobank (CSIRO) holds the ‘key’ to link these two codes together. 

When you link data, the code from the biobank is replaced with matching ABS code, 
so that in the final spreadsheet all data (whether its from the ABS or the Biobank) that 
comes from the same person is labelled with the same code. It is now linked, and 
researchers can examine relationships between different pieces of information from 
the same person without ever knowing any identifying information. 





Researcher access to samples and health data

Who can access/use my 
sample and information and 
to undertake data linkage? 

Access to samples and information held in the biobank, and permission to link any 
of this information to health or other information (data linkage) is only provided to 
researchers to undertake projects that are approved by the Australian Health Biobank 
Steering Committee following strict scientific and ethical scrutiny. 

All researchers requesting access to samples/data must apply and be approved by 
the Australian Health Biobank Steering Committee and the Australian Health Biobank 
Science/Technical Advisory and Access Committee. These committees will review 
whether the proposed project has received prior scientific and ethical approval, 
and that the research fits within the purpose of the biobank and meets other 
general requirements. 

How will I know that the 
researchers accessing 
my samples and data 
are legitimate? 

Before they can access samples and linked health data, researchers must apply to 
the Biobank. They must provide detailed information about their research project 
and credentials. 

Research projects must demonstrate scientific credit, must be approved by a Human 
Research Ethics Committee and must have the potential to improve the health and 
wellbeing of Australians. 

The Australian Health Biobank custodian (the CSIRO) will ensure researchers meet the 
above requirements before approving any access to the biobank samples and data. 

How long can a researcher 
hold results of research 
done on my sample? 

Researchers can hold your sample and research information in accordance with the 
registered Human Research Ethics Committee approval and the Australian Health 
Biobank Custodian’s approval for their research project. They can only use your 
sample or results from your sample for the project for which it’s approved. 

The length of time a researcher can hold results can vary between projects. 







Researcher access to samples and health data

Will commercial researchers 
be able to access my 
samples and data? 

Commercial organisations will be able to apply to access samples in the biobank. 
This is because commercial organisations are good at turning research findings into 
new and improved diagnostic tests, treatments and medicines that can be made 
widely available to benefit human health. 

Commercial research will have to meet the same strict access criteria that all 
applicants must meet and the Australian Health Biobank custodian will decide 
whether to grant access. 

Researchers also may commercialise their research findings. This means that it’s 
possible that research done on your samples could lead to discoveries that lead to 
the development of a new test or product. It’s also possible that the researchers or 
company that makes this discovery could make money from it. 

If this happens, this money will be paid to the company or researchers who made the 
discovery and will enable them to continue to do more research. Neither you nor the 
biobank will receive any financial benefit if this happens. 

You or your family will not derive any personal financial advantage from 
this commercialisation. 

The Australian Health Biobank will also not benefit financially from 
this commercialisation. 





Protecting your privacy

Where are the results 
of research done on 
my sample stored? 

The data from research done on your sample will be held securely by CSIRO who will: 

• assign unique codes to your samples and results of research so these are not 
labelled with any information that could identify you 
• keep your identifying information details separate from your data and samples 
• use stringent security measures to prevent unauthorised use, including strict 
access controls, computer security and data encryption techniques, confidentiality 
agreements, and staff training 
• hold information in secure databases, which can be accessed only by the 
authorised staff members and by approved researchers 
• have a decoding step that will allow us to re-link your identifying details with your 
samples and information, should you want to withdraw from the project or to 
make sure that the database records are correct. 


Researchers may keep a copy of the results of analyses that they do on your samples, 
but this will not include any details that could identify you. 







Protecting your privacy

How is my privacy protected? 

The Australian Health Biobank is committed to making sure that information about 
you is kept safe and in strict confidence. This project will be carried out according 
to the National Statement on Ethical Conduct in Research involving humans 
(March 2007), produced by the National Health and Medical Research Council of 
Australia, The NHMRC Biobanks Information Paper (2010), the CSIRO privacy policy 
and compliance with Section 95B of the Privacy Act. 

These statements have been developed to protect the interests of people who 
agree to participate in human research projects. The information about you stored 
electronically by the Australian Health Biobank Custodian will include information 
such as your name, sex and date of birth, the coded samples you have provided and 
where in the Biobank facility they are stored. 

All information collected about you will remain confidential and will be managed 
with a specific code allocated to you. Information that can identify you and the 
information about your samples is stored in separate databases. 

The Australian Health Biobank, and Australian and international researchers accessing 
the Biobank must adhere to these laws, their ethics approval and policy. 

Only authorised staff members will have access to your information. 
Researchers approved to receive samples/data will not be given any information 
that would allow them to identify you. The utmost care will be taken to ensure the 
confidentiality of all data. Your identifying information and research data will not 
be released to Third parties, such as employers or insurance companies or family 
members, unless required by law or a court order. 

Could I be identified from 
my sample or results of 
analyses on my sample 
being held by the biobank? 

Your name and address have been removed from both your samples and any results 
from research on your sample and replaced with a unique code. This helps to protect 
your privacy. 

Researchers must sign agreements that control their access to samples and 
information. They are not permitted to disclose or transfer samples or information to 
anyone else or to use them for purposes other than those agreed to. Researchers must 
also agree that they will not try to re-identify you from your data and samples. 

When researchers have used the samples for the approved research, they must return 
them to the biobank or destroy them according to strict protocols. Researchers must 
also return their research results to the biobank, so that those results are available for 
other researchers to use in the future. This facilitates future research and enriches the 
database of the Australian Health Biobank. 

In rare cases, researchers might be able to identify you from your health-related data. 
If this happens, researchers are required by law to maintain your privacy. 







Risks

Are there any risks? 

While we take the greatest possible care to protect you, there are some risks 
associated with participating in any health and medical research. This could include: 

• small amount of pain or discomfort from the needle when giving a blood sample 
and small amount of bruising or discomfort where the needle was inserted. 
There is also a very small chance of infection at the injection site. It is not expected 
that these risks will be lasting or will cause much discomfort. 
• minimal risk of unauthorised access to your samples. There are rigorous 
physical security measures in place to protect your samples and your identity. 
The samples will be stored in a high-security facility and will not be labelled with 
any information that could identify you. Health information is regarded as one of 
the most sensitive types of personal information. For this reason, there are laws, 
policies and procedures in place to protect the safety and security of your sample 
and your health and personal information. However, there is a rare risk of breach 
of your privacy. This means that researchers might work out who you are from your 
samples, or that identifying information is released by accident to people who are 
not authorised to see it. If this were to happen, it would be dealt with in line with 
strict Commonwealth Government privacy laws and guidelines. 






Contact

How will the Biobank stay 
in contact with me? 

The Australian Health Biobank will keep your contact details so we can stay in touch 
with you. 

Once you’ve had your samples for the biobank collected, you will be given the option 
to receive regular newsletters. These newsletters will only be sent to participants in 
the biobank and will include updates on the progress of the biobank. You can choose 
to receive newsletters by email or by post and you can opt in or out of receiving them 
at any time, either via the Australian Health Biobank website (csiro.au/biobank) or 
by getting in touch with us by phone (1300 363 400), email (biobank@csiro.au) or by 
post (PO Box 10041, Adelaide BC, SA 5000). 

It is possible in the future that some researchers will want to do research projects 
where they need to collect some additional information (for example, extra samples 
or a new survey). If this happens, a person from the Australian Health Biobank may 
contact you on behalf of a researcher to ask if you want to participate in a project 
like this. If you are contacted in the future, you can decide if you want to take part 
without affecting your participation in the biobank. You can also decide not to be 
contacted about this type of research if you would prefer not to. 

We may need to contact you from time to time to let you know about changes to the 
biobank that may impact on your decision to continue to take part or may change 
how your samples and information are used. Because of this, it’s important that you 
keep your contact details with us up to date. 

How do I update my 
contact details? 

As a biobank participant, you will be given a unique code that you can use to access 
a private page on our website that only you can get to. This page will provide 
information on your samples and how they have been used. You will also be able to 
manage your consent status, opt in or out of receiving newsletters or information 
about additional research, and update your contact information. 

The forms for changing your consent status, updating your contact details, or 
changing your nominated contacts will also be available on the Australian Health 
Biobank website. You can either complete these forms online or download them and 
send back to us by email or post if you prefer. 







Contact

What happens if the 
biobank can’t contact me? 

Your consent form to participate in the Australian Health Biobank provides an option 
for you to name one or more people (family member or other trusted individual) to 
be your proxy only for purposes of your continued participation in the Australian 
Health Biobank. 

In the event that you should die or become mentally incapacitated during the course 
of your participation in the Australian Health Biobank, your nominated person will 
have the authority to decide to either (a) remove your samples and/or data from 
the project (subject to the limitations on removal described in this consent form); 
(b) allow the Australian Health Biobank to maintain your samples and/or data for 
continued research and use in accordance with this consent form; or (c) authorise the 
Australian Health Biobank to obtain and add additional data to the project on your 
behalf. They will also be able to help us find you in the event that we are not able to 
get in contact with you. 

You will be asked to discuss this situation with family members, or a person 
nominated by you to make decisions on your behalf and let us know your decision 
via the consent form. 





Closure of the Biobank

What happens if the biobank 
needs to be closed down? 

If for some unforeseen reason the biobank is required to close: 

• all research results and information will be put into an archive that will be 
overseen by CSIRO 
• all the samples and data will be destroyed or 
• all of the samples and data will be transferred to another biobank 


You will be contacted prior to closure of the Australian Health Biobank (unless you 
have not consented to further contact) to discuss your data and samples being 
archived, destroyed, or transferred to another biobank, including whether there are 
any cultural or other requirements in relation to their sample. 





More information

Where can I find 
more information? 

If you would like more information about the Australian Health Biobank or 
your participation. 

Website: csiro.au/biobank
Phone: 1300 363 400
Email: biobank@csiro.au 

Please keep a copy of your Participant Information Sheet with the copy of your 
signed Consent Form. 





You can contact us at: 

Australian Health Biobank 
PO Box 10041 
Adelaide BC SA 5000 

CSIRO Enquiries 

1300 363 400 
biobank@csiro.au 
csiro.au/biobank