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.

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:

• 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 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:

• hereditary breast and ovarian cancer and some colon cancers
• inherited high cholesterol (familial hypercholesterolemia)
• genetic heart conditions such as arrhythmias and cardiomyopathies

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 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 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 choose to have health results returned to you, your personal details will be used to recontact you. Your details will also be shared with an OurDNA health professional who will be relaying this information to you.
• If you agree to be recontacted about future research, your personal details will be used to do so. In this case, your details will only be shared with other researchers if you agree for us to do so.

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:

• OurDNA Browser: a searchable, public database of summary data on genetic variation
• OurDNA Data: a secure bank of biological and health information for future medical research
• OurDNA Samples: a secure bank of blood samples that have been donated for future medical research

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.