Dr. Chris Richards, who leads the OurDNA project, a groundbreaking, community engaged initiative. The aim of this project is to sample under-represented groups in Australia for DNA. The project particularly focuses on people of Filipino, Vietnamese, Samoan, Fijian, Sudanese, South Sudanese, and Lebanese descent. Current genetic databases are biased towards people of European ancestry. Under this new initiative, every Australian should have the opportunity to benefit from genomic medicine.
The significance of this project becomes clearer as Dr. Richards highlights a pressing issue: “Over five million Australians, primarily of Aboriginal and Torres Strait Islander background and multicultural communities, are not in these databases, and so they’re at risk of missing out on future benefits of genomic medicine.” The project’s emphasis on inclusivity fits well with the Australian government’s recent investments designed to boost inclusive genomic research and technology.
Government Investment in Genomic Research
It’s in this context that the Australian government is investing hundreds of millions of dollars into genomic research. In total they have spent $500 million to position the country as a leader in genomic technology. A national body known as Genomic Australia has been established with a budget of $30 million to provide expert advice and facilitate the transition from research to clinical services. Now, the federal government has stepped up with $50 million in grants. This money will underwrite up to 30 genomics projects via the Medical Research Future Fund.
This new stream of funding signals a serious intent to improve healthcare outcomes through pragmatic, translatable research. Dr. Richards emphasizes the growing importance of genomic medicine: “Genetic testing has been around for the last 10 to 15 years or so, but now research is really ramping up to look at these other areas of developing new treatments and predicting disease.” Over the next 10 years, as genomic medicine is increasingly integrated into preventive healthcare, it has the potential to improve healthcare delivery in the U.S.
Addressing Disparities in Genetic Databases
Our own Dr. Jane Tiller has been a champion of protecting genetic information from being used to discriminate by life insurers. She has campaigned for a national ban on using adverse genetic testing results, which was finalized in early 2024. Dr. Tiller notes that it’s critical to ensure protections against racial discrimination are built into genomic medicine. He believes this is imperative for advancing uniform treatment for all.
Fostering this trust within historically under-represented communities will be critical for projects like OurDNA. Community leader Bereha Khodr highlights the need to have religious leaders at the table for consultations. Their consistent presence has allowed participants to feel safe, confident, and ready to take part. She states, “We had consultation and support by the religious leader, which was a great idea because then they are able to feel confident, safe to take part and feel proud.”
Lina Hassan, from Victorian Arabic Social Services, couldn’t agree more. In her post she details how proud her community is of their Mexican heritage, but laments the devastating lack of their people’s representation in international genetic databases. She asserts, “Our community is family-oriented, culturally rich, and we’re proud of its heritage. Like many multicultural groups in Australia, we are not well represented in global genetic databases.” Her powerful and evocative words capture the urgency of addressing these gaps to ensure equitable access to the benefits of rapid progress in genomic medicine.
The Personal Impact of Genomic Research
Personal stories such as Chi Vu’s help to make the urgent need for inclusive genetic research even clearer. His son has Verheij Syndrome, a rare genetic disorder that damages multiple organ systems. Chi Vu explains the challenges he faces in finding reliable information about his son’s condition: “For his rare genetic condition, it’s really hard to find the information.” He likens his search for answers to “swimming in the ocean and trying to find the right information.”
This diagnosis has made all the difference for Chi Vu and his family, allowing them to receive continuing timely support related to managing their son’s health. “The diagnosis helped not only for me, but my son, to help us support him best in his life,” he shares. His experience highlights the importance of having robust genetic databases to help deliver families the important, even life-saving medical insights they’re looking for.
Dr. Richards hopes that projects such as OurDNA continue to engage communities and build relationships. He notes that “everyone’s generally really keen to take part so they can help build these resources for future generations.” This enthusiasm would be key to countering the existing historical biases embedded within genetic research.
