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. 

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.