OurDNA is partnering with communities to include ancestry groups who are mostly missing from medical research. We work with multicultural organisations, community leaders and communities to build genetic resources that represent all communities.

The genetic resources that OurDNA is building will enable all Australians in future generations to benefit from advancements in medical research. Read more about what we’re doing here.

OurDNA is a flagship project of the Centre for Population Genomics. The Centre is set up to:

• Include under-represented communities in genomic research;
• Explore the function and health relevance of human genes; and
• Improve the diagnosis and treatment of genetic diseases. 

The Centre is a not-for-profit joint initiative from two of Australia’s leading research institutes: the Garvan Institute of Medical Research in Sydney and the Murdoch Children’s Research Institute in Melbourne.

OurDNA is funded by: 

• The Centre for Population Genomics’ founding institutions: Garvan Institute of Medical Research and Murdoch Children’s Research Institute
• People who donate funds to our research
• Funding for this research has also been provided by the Australian Government’s Medical Research Future Fund (MRFF) grant 2015969 (CIA Daniel MacArthur; 2022-2027) from the Genomics Health Futures Mission and by the National Health and Medical Research Council (NHMRC) investigator grant 2009982 (CIA Daniel MacArthur; 2022-2026). The contents of this published material are solely the responsibility of the authors and do not reflect the views of the Commonwealth of Australia or the NHMRC.
• The OurDNA program also receives support from Google’s Digital Future Initiative. Read more about this collaboration here.

OurDNA is currently funded until the end of 2027. It is our intention to continue our work until all Australian communities are represented and for the OurDNA database and sample bank to be available for as long as possible for researchers. 

Yes, the OurDNA project has been approved by the certified Human Research Ethics Committee (HREC) of the Royal Children’s Hospital. The reference for our ethics approval is: HREC/91986/RCHM-2023

If you have any questions about the OurDNA ethics approval process, or wish to speak to someone independent of the research team, you may contact the Director of Research Operations at The Royal Children’s Hospital. You can phone the Director on (03) 9345 5044 or email them at rch.ethics@rch.org.au

At the moment, Australians from the following ancestry groups are under represented or entirely missing in genetic resources:

• East African (e.g., Ethiopian, Ghanaian, Kenyan, Mauritian, Somali, South Sudanese, and Sudanese)
• North African and Middle Eastern (e.g., Assyrian, Chaldean, Egyptian, Iranian, Iraqi, Lebanese, Palestinian, Syrian and Turkish)
• Oceanian (e.g., Fijian, Mãori, Papua New Guinean, Samoan, and Tongan)
• South-East Asian (e.g., Cambodian, Filipino, Indonesian, Malay, Thai, and Vietnamese)

Australian doctors have also told us that it is hard to find information about these ancestry groups in the resources and databases they use to diagnose genetic and health conditions. 

OurDNA is working to engage with the communities underrepresented in genetic resources. Visit this page to check which communities we are actively working with.

While we are not working directly in Indigenous communities, we are an active member of the ALIGN and CONNECT consortia, national Indigenous-led efforts that are working to empower Aboriginal and Torres Strait Islander people in genomic medicine and research.

We provide technical advice for the development of genomic data infrastructure for nationally consistent, culturally appropriate, ethical storage, management, and sharing of genomic data to benefit Indigenous Australians.

Cells are tiny living parts of a person’s body that work together as tissues and organs to stay alive and maintain body functions. Cells can be frozen or grown for study.

DNA (deoxyribonucleic acid) can be found in every part of the body, including blood and saliva. DNA contains a person’s genetic instructions, mostly in sections called genes.

A gene is a section of DNA that contains instructions for a person’s body to develop, grow and work. Differences in genes can help to explain how people look and how their bodies work.

Genetics is the study of genes and their role in body functions.

A genetic variant is a difference or a change in a person’s genetic information. Some genetic variants help to explain differences in the way people look, such as hair and eye colour. Other genetic variants can affect a person’s health or the way they respond to medicines or treatments.

Genetic information contains the instructions that are used by people’s bodies to develop, grow and work. Differences or variants in genetic information can affect health. People share some of their genetic information with their blood relatives, including parents and grandparents, brothers and sisters, and children. 

All of a person's genes or genetic information is called a genome.

Genomics is the study of people’s genomes. In genomics, researchers study many genes at once, or many people’s genomes at once.

Genetic or genomic medicine uses the information in your DNA to diagnose or predict health conditions and guide their treatment or prevention.

To take part in OurDNA, you must:

• Be over 18 years old
• Be eligible for Medicare
• Be able to give a blood sample in Victoria or New South Wales
• Self-identify as having ancestry from one of the communities underrepresented in genetics resources. Visit this page to check which communities we are actively working with.
• People cannot participate if they or anyone in their close family has a known severe genetic health condition, like cystic fibrosis or muscular dystrophy. This does not include common conditions like inflammatory bowel disease, cancer or diabetes.

If you join OurDNA and choose to get genetic information back, this information could tell you something about your health or the health of your family in the future. Only a small number of people who take part in OurDNA are likely to receive a result.

While there is no cost to find out this information through the study, we require Medicare eligibility to ensure you can access clinical services if we do return a result. If you are covered by Medicare in Australia, there is usually no or low cost for genetic health services with a doctor's referral.

Regardless of visa status, OurDNA is only including people who are covered by Medicare at the time of consent. If you are unsure about your eligibility for OurDNA, please speak with a member of the study team. 

The goal of the OurDNA program is to include representation in genetic resources of people from specific underrepresented communities in genetic resources. However, we understand and respect that some people may identify as being part of one cultural community, but have a different genetic background. 

If you identify as having ancestry from one of the communities we are actively working with, but you are not sure of your background or do not know, we encourage you to take part.

Yes, you can take part in OurDNA if you have tattoos.

No, you only can only take part once. Each person’s unique contribution is valuable but we need many different people to take part to support the research.

If you choose to take part in OurDNA, we will ask if you would like to receive information back about a genetic change that could tell you something about your health in the future or the health of your family.

Only a small number of people who take part in OurDNA are likely to receive a result like this. OurDNA will only offer this information for genetic changes that are:

• well understood, and
• where there are actions that you can take to improve your health or to prevent a health condition

This information may not be available for a few years because researchers need to study the genetic information in OurDNA to work out what is helpful to return. If you are interested in genetic testing for health purposes, please talk with your doctor or a genetic health professional.

OurDNA does not return information about genetic ancestry to people who take part. We understand that many people are curious about their ancestry, but we recognise that there are many different ways to think about family, connections and identity. 

We want to respect everyone’s identity and culture, and the mission of OurDNA is to make genetic discoveries that benefit everyone. If you take part in OurDNA, you can choose to get information back that could tell you something about your health. We want to make sure that the information returned is useful for you or your family’s future health. 

If you take part in OurDNA, you can request a copy of your ‘raw’ genetic data. Your genetic data is an electronic readout of your DNA that can only be read by computer programs. Most, but not all, participants in OurDNA will have raw genetic data created from their blood sample. If you request it, and we have the raw data, we can provide it to you. However, it will not come with any written information about your health, your ancestry or other characteristics. If you have any questions or would like more information, please contact us.

Consent for taking part in the OurDNA program is done through a secure online portal. You can register on the website by clicking the “Join now” button or through the “OurDNA” app in the App Store or Google Play Store.

The online portal will give you information about taking part in OurDNA and explain what will happen with your blood and DNA samples. There are five forms for you to complete to give your consent:

• Screening survey
• Registration
• Ancestry, health, and cultural information
• Your consent
• Blood collection

The consent process will take about 20 minutes to complete. If you have any questions or need help, please contact us.

If you take part in OurDNA, you give a blood sample at an OurDNA event or a partner pathology clinic. 

Some of your blood sample will be used to collect DNA and read off your genetic information. Your blood, blood cells, health information, and genetic information will be stored and studied to make future health and medical research easier to do. 

If you plan to give your blood sample at one of our pathology partner clinics, please visit them from Monday through Thursday. 

Giving blood between Monday to Thursday helps ensure your involvement has the greatest impact. Some labs are closed on weekends and shipping is also slower. We can’t guarantee that samples given Friday to Sunday can be used in OurDNA unless they are given at an organised OurDNA event.

If you can only give blood on the weekend, please check here for upcoming OurDNA events.

Our qualified blood collectors will only take a small sample of blood: 30 ml. This is less than two tablespoons of liquid!

When you give your blood sample, your name, date of birth, and a code to identify you will be used to track your sample during shipping. Your donated blood sample will be stored and processed at a processing laboratory.

Your blood sample, blood cells or DNA sample will be kept at Biobanking Victoria. Biobanks are laboratories that house collections of biological samples in controlled storage.

Your sample will only be handled or accessed by a small number of people in the OurDNA team, and only for reasons you agree to.

OurDNA has set up secure systems to store your personal details, health and genetic information, and donated blood sample. Blood, cell and DNA samples will be stored separately in a biobanking facility for as long as possible.

All electronic information will be securely stored on Australian based servers in databases run by certified health providers, health information providers, or medical research institutes. These databases are secure and follow strict rules and best practice on the handling and storage of information.

If you take part in OurDNA, your personal details will be used to track your blood sample from the pathology partner or OurDNA event to the processing laboratory. The qualified blood collectors who take your blood will know your name and date of birth, and only approved OurDNA team members will also be able to log in to the portal to help or remind you during the blood collection process.

Your personal details will be held in one place and your genetic information will be held in another. As the blood sample is processed, studied, stored and shared, it will be linked to your personal details through a code or number. 

The wider OurDNA team and other health and medical researchers will only see the research project code, not your personal details. The code may be used to re-link your genetic information with your personal details, but only if you choose to get genetic information about your health back from OurDNA.

Participant privacy and data security is very important to us. If you decide to take part in OurDNA, your personal information and your DNA will be stored separately. Only authorised OurDNA team members can access your personal information, and only for things you agree to.

If you take part in OurDNA, your genetic information will be combined with many other people’s information, summarised, and put into public databases to help doctors and researchers see trends and patterns in the data. People who use the public databases will not be able to see who the information came from.

Health and medical researchers outside OurDNA from around the world will be able to apply to look at and work with your samples and information that was collected through the OurDNA project. It is not possible to predict all the future uses of your data or samples. However, your samples and data will only be used for future ethically approved studies.

Depending on what you have consented to, your de-identified data may be used in studies that involve government agencies, such as the Department of Health. 

Data that could identify you will be kept confidential except if required to be released by law. This would occur only in very rare circumstances such as information being subpoenaed in an investigation of a serious crime. The use of this data would occur in line with the relevant federal and state privacy acts.