Participant information brochure 

You are being given this information brochure because you are being invited to 
participate in the Australian Health Biobank. 

The information is important to help you decide whether to donate a sample 
to the Australian Health Biobank for use in future health and medical research. 
Read it carefully and ask as many questions as you like. 

If you want to, you can ask questions about the biobank of: 

• the person who gave you this information brochure and is 
asking for your consent, 
• your doctor or other healthcare professional, 
• your family and friends. 


You can also find more detail about some of the topics covered 
in this information brochure on the Australian Health Biobank 
website csiro.au/biobank. 

You are being invited to give your consent to: 

• Donate blood and urine samples to the Australian Health 
Biobank to be stored indefinitely. 
• Have your samples and the results from research done on 
your samples, made available to approved researchers for 
future health and medical research. 
• Have the results from the research done on your samples 
linked to existing health and general information 
about you (like your job, age or gender) that is held by 
the Australian Bureau of Statistics (ABS) or State and 
Commonwealth Governments. 


What is the Australian Health Biobank? 

The Australian Health Biobank is being set up to provide a 
national collection of biological samples from the Australian 
population. This will provide a unique resource for researchers 
in the future to undertake a wide range of research projects to 
improve the health and wellbeing of Australians. The Australian 
Health Biobank will help make this research easier by making 
a collection of samples available to researchers that represent 
the Australian community. 

Samples for the Australian Health Biobank will be collected 
from 2022 to the middle of 2024 from participants of the 
National Health Measures Survey who agree to also donate 
samples to the biobank. 

From the middle of 2024 researchers will be able to apply 
to the Australian Health Biobank for access to samples (or 
information from research undertaken on your samples) for 
their projects. They will also be able to apply to link the results 
generated from samples in the biobank to other existing health 
and general information. 

All research projects conducted using samples or information 
from the biobank will need to have the potential to make a 
significant contribution to health and medical research and 
benefit the health and wellbeing of Australians. 

Who is funding the 
Australian Health Biobank?

The Australian Health Biobank is being funded by the 
Australian Department of Health who have contracted 
the Commonwealth Scientific and Industrial Research 
Organisation (CSIRO) to act as the Australian Health 
Biobank Custodian. 

The CSIRO will oversee that your samples, personal 
information and any results from your samples are stored 
securely. They are also responsible for making your 
samples (and information that is generated from these 
samples in the future) accessible to researchers. 

The CSIRO will be the point of contact both for people 
who donate to the biobank and for the researchers who 
use the biobank. 



How to donate to the 
Australian Health Biobank 

If you decide to contribute to the biobank, you will 
be asked to attend a second appointment at a Sonic 
Pathology Australia collection centre to donate blood 
(approximately 20 ml or 1 tablespoon) and urine 
(approximately 20 ml or 4 teaspoons) to the biobank. 

This can be at the same collection centre as the one 
you attend to provide blood and urine samples for the 
National Health Measures Survey, or a different collection 
centre if this is more convenient. For a list of the closest 
collection centres please: 

Visit: soniccommercialpath.com.au/our-locations 

Call Sonic: 1800 577 500 

Otherwise speak to your interviewer or 
call the ABS on 1800 482 517. 

You will be given a separate referral form for the 
biobank, which you will need to take to the collection 
centre when you get your samples collected. There is 
no cost to you for this and you will receive a $75 gift 
card to help cover any costs, such as travel expenses or 
childcare, for visiting a collection centre. This will occur 
automatically once the ABS receives notification that you 
have attended your second appointment at a collection 
centre. You should receive this within 3 weeks from when 
you provide samples. 

If you find it difficult getting to a collection centre, please 
let the interviewer know or call 1800 482 517 to discuss 
other options such as a home visit. Note: A gift card is not 
provided if you receive a home visit. 

If you decide to provide samples to the biobank, we will 
also collect some personal information (like your name 
and contact details) so we can keep in touch with you. 

It is your choice to donate or not 

Choosing to donate your samples for health and medical 
research is voluntary. This means you don’t have to do it if 
you don’t want to and there won’t be any consequences for 
you if you choose not to. You can talk to your doctor, family 
or friends before you decide, but remember the decision to 
donate or not is yours. 

Your decision of whether you donate samples to the Australian 
biobank or not will not affect your healthcare, medical 
treatment, or other services you receive from the government, 
now or in the future. 

You are not likely to benefit directly 

You are not likely to get any direct benefits from donating 
to the biobank. However, the results of research using your 
samples could help to improve the health and wellbeing of 
Australians in the future. 

Your samples could be held indefinitely 

Researchers are continually making new discoveries, and new 
diseases are always emerging. To make sure the Australian 
Health Biobank can support health and medical research long 
into the future we could keep your samples in the biobank 
indefinitely, or until you choose to stop taking part. 

You can choose to stop taking part at any time 

If you choose to donate a sample, but change your mind later, 
that is ok. The decision will not affect your medical treatment 
or healthcare in any way. 

If you choose to stop taking part, the samples you donated will 
be removed from the biobank and safely destroyed and if any 
of your samples have already been given to a researcher, they 
will also be asked to destroy them. 

If research has already been carried out on your samples, you 
can also ask that this information is deleted. You should be 
aware that it isn’t possible to remove information from your 
samples from studies that have already been published. 

If you choose to stop taking part, you can contact the 
Australian Health Biobank using the details below or visit 
csiro.au/biobank. Once you withdraw, we won’t contact you 
again and will remove your information from our database. 

How your samples could be used in research 

From around the middle of 2024 (when all samples for the 
biobank are collected), approved researchers can request 
access to biobank samples and related data. 

Your sample and results of research done on these samples 
could be used for a range of different health or medical 
research projects, now and in the future. Some examples 
could include: 

• Research to help us understand why some people are more 
likely to get to certain diseases than others. 
• Research that identifies how different people react to the 
same treatment – which could help make these treatments 
work better. 
• Research to look at levels of nutrients or toxins in the 
Australian population. 


Any results from research done on your samples will also 
be returned to the Australian Health Biobank, so that this 
information can be made available to other researchers for 
new research projects without using more of your samples. 

To be approved by the biobank to access your samples and 
information related to them, researchers will need to be able 
to demonstrate that their research contributes to the aim of 
the Australian Health Biobank, which is to improve the health 
and wellbeing of Australians. Researchers will not have access 
to any information that could identify you (like your name and 
contact details). 

It’s important for you to know that you won’t get to choose 
how your samples and information are used after you 
donate them. 



Your samples might be used for genomic 
research, but only if you agree 

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. Genomic technology allows researchers 
to test many genes at once (genomic testing). 

Being able to test a person’s DNA or genomic information 
helps scientists understand how to predict diseases and 
potentially treat them. Because there are similarities in the 
DNA or genomic information of different people, the results of 
testing one person can help understand how to treat a disease 
in another person. 

Because your genomic information is unique to you it could 
also be used to identify you and could provide information 
about your health or risk of getting specific disease in 
the future. Researchers who want to access your genomic 
information must agree not to attempt to identify who you are, 
and to handle your genomic information carefully to ensure 
your privacy is protected. We will also ask you if you want to 
learn about any information we learn while looking at your 
DNA about risks to your health. 

When researchers share the results of their projects that 
involve genomic information, they often need to share some of 
the genomic information they used so that other researchers 
can learn from their research. Because genomic information 
can identify who you are if it is combined with other genomic 
information (like data from genomic testing companies), 
researchers must agree to be careful about how they share 
this information, so it doesn’t let other people identify you. 
Genomic technology keeps changing quickly however, so while 
we will do this, we can’t guarantee that genomic information 
that is shared about you won’t allow people to work out who 
you are in the future. 

You can choose whether you want to allow genomic research 
to be done on your samples when you complete the Australian 
Health Biobank consent form. Whether you decide to agree 
to genomic research being done on your samples or not, will 
not affect the use of your samples in other types of research. 
You can also change your mind about agreeing to let your 
samples be used in genomic research at any time by contacting 
us or visiting csiro.au/biobank. 

For more detailed information about genomic research, please 
see the FAQs section of the Australian Health Biobank website. 

Results of research on your samples could be 
linked with your health information and general 
information that describes who you are 

As part of being involved in the biobank, you consent to having 
the data from research done on your samples linked to existing 
health and general information about you (like your job, age or 
gender) that is held by the Australian Bureau of Statistics (ABS) 
or State and Commonwealth Governments. 

Being able to link the information from research on samples 
from the biobank to these other types of information is 
important to help researchers better understand the things 
that could change the risks of disease and allow them to better 
prevent and treat it. 

The type of information that they could link to could include: 

• information collected as part of the National Health Survey 
and the National Nutrition and Physical Activity Survey, 
• the times you go to see a doctor (based on Medicare claims 
information), 
• the prescription medicines you get from a pharmacy (based 
on Pharmaceutical Benefits Scheme claims), 
• other information that affects health, such as your education, 
employment and lifestyle. 


Before information from research done on your samples is 
combined with any other information the research will need to 
be approved by the biobank and by the ABS, who follow strict 
protocols to protect your privacy and keep the information 
secure. The ABS doesn’t keep any personal information (like 
your name and address) with their data, so it can’t be linked 
to information that could identify you. If a linkage project is 
approved, the linking of the information will be done by the 
ABS on a secure platform and the results deleted after they 
have been provided to the researcher who requested them. 

For more detailed information about data linkage, please see the 
FAQs section of the Australian Health Biobank website. 

Commercial researchers could request access 
to your samples in the future 

The Australian Health Biobank is being set up as a national 
resource to benefit the health and wellbeing of Australians into 
the future and will be a not-for-profit activity. 

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. 

For more detailed information please see the FAQs section of the 
Australian Health Biobank website. 



Where your samples and information 
will be stored 

Your samples will be stored in a secure biobanking facility 
(further details are available at csiro.au/biobank). The samples 
will be kept in locked freezers and will only be accessible to 
authorised individuals. 

Your personal information, details about your samples and 
results of research on your samples will be stored on secure, 
password protected servers by the CSIRO. 

How researchers will access your samples 
and information 

Before the biobank allows researchers to use your samples or 
information, their research project will need to be approved by 
an ethics committee (to make sure that the research respects 
and protects you and the other people who have donated 
samples). The research must also be compliant with all relevant 
legal or other requirements. The biobank will only approve 
the use of your samples and information for research that is 
high quality and has a high chance of improving the health and 
wellbeing of Australians. 

Once a research project is approved, the biobank will organise 
for your samples and/or information from previous research on 
your samples to be sent to the researchers to do the project. 
Once the research is finished, the researchers will need to 
destroy any remaining samples or send them back to the 
biobank. They will also need to give the biobank a copy of any 
information from research on your samples. 

Your sample and information from your 
sample can only be used by approved research 
projects in Australia 

Your samples and information held by the biobank about 
research on your samples will not be sent overseas, and all 
analyses on your samples will be carried out in Australia. 
This is important to make sure that the use of your 
samples and information is covered by Australian laws and 
privacy regulations. 

You won’t get individual results from research 
projects, but you can find out what projects 
your samples contributed to 

In most cases, you won’t find out your own results from any 
research that are done on your samples. You will, however, be 
able to find out about whether your samples have been used 
in research and the type of research projects they have been 
used for. 

To let you do this, we will give you a special link and 
a password that is unique to you, that you can use on the 
Australian Health Biobank website. This link and password 
will be sent to you either by email or post after your biobank 
samples have been collected. 

Information on all research projects that are done using 
samples or information from the biobank and the results of 
these projects will be also listed on the Australian Health 
Biobank website (csiro.au/biobank) so you can see what the 
research that used your samples discovered. 

If you agree for your samples to be used in 
genomic research, researchers could find 
things that have serious and important health 
consequences for you or your family 

When testing your sample, there is a very small chance that 
researchers may find out that you or your family members 
might be at risk of a serious health condition. For example, 
they may discover you have a gene that puts you at risk 
for sudden heart attack, a type of cancer or another 
life‑threatening condition that can be treated. This gene might 
be something you share with your genetic relatives, such as 
your parents, siblings or children. 

In case this happens, we are asking you to nominate a doctor 
who we can contact if something serious is discovered. 

If something potentially serious is found by a researcher, it will 
first be reviewed by clinical experts. If these experts confirm 
the researcher’s finding, then they will inform the doctor you 
have nominated. Your doctor will then contact you to explain 
that something serious has been discovered, explain what 
the finding is and refer you to a medical expert or genetic 
counsellor who can assist you with the next steps. 

They will only contact you if the finding is significant and 
confirmed and if there is something that can be done to help 
you or your family to stay well (like a specific treatment or 
lifestyle change). General or non-specific health information 
generated in research projects – such as evidence of a risk 
of high cholesterol or a gene that only gives you a slightly 
increased risk of a common medical condition – will not be 
returned to you. 

If you’re not contacted about a finding, it does not mean you 
don’t have any health issues. Researchers do not perform 
general testing on your sample, so it is important to continue 
your regular health check-ups with your family doctor and 
other health professionals. 

You can decide not to be contacted about serious findings 
if you wish. 

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 that you or they apply for in the 
future (for example life insurance or income protection). It’s 
important for you to consider this risk before deciding if you 
want to be contacted about any serious findings. 



If something happens in the future which means you can’t 
make decisions for yourself, you can let us know now (on your 
consent form) if you want your family to be informed in your 
place if we find a serious finding related to your samples. 

For more detailed information on serious findings, please see the 
FAQs on the Australian Health Biobank website. 

Your information and samples will be protected 

Your samples will be labelled with an Australian Health 
Biobank reference number before they are stored in the 
biobank. There will be no personal identifying information 
written on your samples. 

Your personal information (like your name and contact details) 
is stored according to strict security and privacy protocols and 
in line with legal and ethical requirements. This information 
will be stored in a separate database to the database where we 
store the results of research done on your samples, including 
any genomic information. 

Researchers who access your samples or results from your 
samples will never be given any information that identifies you, 
so they won’t be able to tell who you are. 

Only individuals who are authorised by the Australian Health 
Biobank will be able to access your samples or information. 
This includes staff in the biobank facility and CSIRO employees 
who manage the project or databases. All these people will 
have to complete regular police checks and will be bound by 
strict privacy and confidentiality protocols. 

What are the risks? 

While we will do everything we can to protect your 
privacy and confidentiality, there is a small risk that 
breaches could happen. 

In rare cases, researchers might identify you from your 
information. If this happens, researchers are required by 
law to maintain your privacy and report any breaches to 
us and to the relevant ethics committee/privacy officers. 
If a breach of privacy happens, it will be dealt with in line 
with privacy laws and guidelines. 

In very rare cases, we may have a legal obligation to 
make your information available to third parties who are 
not approved researchers. For example, in the case of 
a new infectious disease that could affect other people 
both you and other parties would be informed, or we 
may have to provide information to the courts because of 
a legal process. 

There are times we will need to contact 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 or by getting in touch with 
us by phone, email or by post. 

It is also 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. 

As indicated above, your doctor may contact you if something 
is discovered that has serious health implications for you or 
your family. If we cannot contact your nominated doctor we 
may also contact you to find out the details of another one. 

Finally, 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. 

You can also nominate one or two people who we can contact 
if we aren’t able to get in touch with you in the future. You will 
be asked to nominate these people on your biobank consent 
form. You should let this person/people know that you have 
nominated them as a contact and confirm they are happy to act 
in this role for you. You can change these people at any time by 
contacting us or via the Australian Health Biobank website. 

If you don’t provide an alternate contact and we are not able 
to get in touch with you, then what you have consented to 
previously will continue to apply. 



You can contact us at any time 

You can contact the Australian Health Biobank at any 
time. You can do this either via the Australian Health 
Biobank website, or contacting us by phone, email or 
by post. Details at the bottom of the page. 

As a biobank participant, you will be given a password 
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 Biobank 
website. You can either complete these forms online or 
download them and send back to us by email or post if 
you prefer. 

If you have a complaint or concerns 

If you have any concerns, feedback or complaints that 
you don’t want to discuss with the biobank, then please 
contact the Human Research Ethics Committee that 
approved the project. This committee is independent 
from the biobank and helps ensure it has the best 
procedures in place to protect your samples and 
information, and that these are always followed. 

CSIRO Health and Medical Human Research 
Ethics Committee 

(07) 3833 5693 
chmhrec@csiro.au 

Privacy

For further information on how CSIRO handles your 
personal information and our complaints process 
please read our privacy policy available on our website 
at https://www.csiro.au/en/about/policies/privacy or 
contact us at privacy@csiro.au. 

What happens next? 

If you agree to donate samples for the Australian 
Health Biobank: 

• Sign the biobank consent form and leave it with the 
ABS interviewer. 
• Provide blood and urine samples for the National Health 
Measures survey at any Sonic Pathology Australia collection 
Centre (Visit 1, See National Health Measures Survey 
Information Brochure). 
• Donate additional blood and urine samples for the 
Australian Health Biobank at any Sonic Pathology Australia 
collection centre (Visit 2), as soon after your first visit as 
you can. 
• You will need to take your biobank referral form to the 
collection centre. 
• You will not need to fast for this additional collection of 
blood and urine for the biobank. 
• Provide your details so that we can keep in touch with you if 
you want us to. 
• We will send you a copy of your signed consent form for 
your records. 


Please keep a copy of this information brochure, along with 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