We’ve answered some questions about OurDNA below. If you have any questions that aren’t answered on this page, contact us.
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:
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:
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
OurDNA works with many community organisations to figure out how to best reach, talk with, and invite people from their community to take part in OurDNA. A full list of the community organisations we partner with is available on this page.
OurDNA and the Centre for Population Genomics are also working with a number of research and industry partners to help deliver benefits from the OurDNA program.
At the moment, Australians from the following ancestry groups are under represented or entirely missing in genetic resources:
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:
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.
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 can only take part in OurDNA once. Each person’s contribution is unique and valuable but we need many different people to take part for OurDNA to make a difference to medical research and healthcare in the future.
If you choose to take part in OurDNA, we will ask if you would like to receive information back about any genetic changes 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:
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 will only offer results for genetic changes that are well understood, and where there are actions you and your doctor can take to improve your health or prevent a health condition.
Conditions could include:
OurDNA does not currently return information for conditions like dementia, where there are many different factors involved, and no clear genetic cause or action you can take.
This information will be returned to you by an OurDNA health professional: for example, a genetic counsellor. Genetic counsellors are trained to support people and families affected by, or at risk of having, a genetic health condition.
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 also 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 genetic information back that could tell you something about your health or your family’s health in the future.
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. However, it will not come with any written information about your health, your ancestry or other characteristics.
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.
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:
The consent process will take about 20 minutes to complete. If you have any questions or need help, please contact us.
OurDNA is asking participants to complete a short set of questions to help us understand some things about your health and if you’ve previously had, or currently have, certain health conditions.
This information will help doctors and researchers to study health conditions that may be common in your community, and make the relationship between changes in DNA and these common conditions clearer. This will help researchers to create better tools to predict, identify and treat conditions, such as diabetes and heart disease.
If you need to update the information you provided in the online consent portal, please contact us. An OurDNA team member will be in touch to help you.
If you take part in OurDNA, you give a blood sample at an OurDNA event or one of out partner pathology clinics.
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 included 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!
If you change your mind about taking part in OurDNA, please contact us. An OurDNA team member will be in touch to help you withdraw from the program, or change your choices.
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.
Data generated from your blood sample, cells or DNA will only be shared with approved researchers, and only for reasons you agree to. Your personal details will only be seen or accessed by a small number of people in the OurDNA team, to get in touch with if you have given consent to be recontacted.
You can find out more information on what happens to the blood samples you give in look at this diagram.
OurDNA has set up secure systems to store your personal details, health and genetic information, and donated blood samples. 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 secure databases 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.
Once your blood sample is processed at the laboratory, your personal details are held in one place and your genetic information is 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 details and your genetic information will be stored separately. Only essential and authorised OurDNA team members can access your personal details, and only for things you agree to.
For example:
If you take part in OurDNA, your genetic information will be combined with many other people’s genetic 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 (without your personal details) may be used in studies that involve government agencies, such as the Department of Health.
Data that could identify you (your personal details) will be kept confidential. We will not share this information unless we are formally required by law and have no choice. 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.
OurDNA is building genetic resources that include multicultural communities to help ensure everyone can benefit from advancements in medical research. This includes:
For more information on the resources being built, visit this page.
The OurDNA Browser is a public resource intended for doctors and researchers with training in genetics and genomics. The public nature of the resource means that more doctors and researchers can access the Browser, leading to more rapid scientific advancements and healthcare benefits for
participating communities.
The OurDNA Browser can be used for scientific discovery, a better understanding of health and health conditions, and to diagnose genetic conditions in communities that are currently underrepresented. Users of the Browser are expected to consider community benefit, ethical impacts, and responsible reporting when working with the data.
The data in the Browser must not be used to identify individuals who have taken part in OurDNA or to create or maintain stereotypes about communities.
The summary data from genetic information available on the OurDNA Browser will be included in the international network of gnomAD databases. gnomAD is a genetic resource that aims to reflect global diversity by including summary data from projects like OurDNA in North America, South America, Europe, Africa, Asia and Australia. It can be accessed by doctors and researchers worldwide to see trends and patterns in the information, but not who the information came from.
Having a single, representative database enables doctors and researchers globally to access the information they need to diagnose and better understand different health conditions. The gnomAD database is based at the Broad Institute of MIT and Harvard in Cambridge, Massachusetts.
Approved health and medical researchers outside OurDNA will be able to apply to look at and work with the samples and information collected through the OurDNA project. Your samples and data will only be used for future ethically approved studies and only for reasons that you have agreed to.
When we share your data or samples with approved researchers, we will manage them securely and remove personal details that could identify you. We will only give applicants access to your health and genetic information if they agree to never use that information to try to identify you.
Approved researchers may be in Australia or overseas, including at universities, hospitals, medical research institutes, and not-for-profit organisations; or researchers who are part of for-profit biomedical, pharmaceutical, technology or diagnostic testing companies.