A collection of 7000 blood samples taken in more than 50 remote Indigenous communities during the 1960s and 70s could be pivotal in helping members of the Stolen Generation find long-lost loved ones.
Anthropology professor Emma Kowal, deputy director at the National Centre for Indigenous Genomics at the Australian National University, said the samples, which have been held in storage, could unlock decades-old mysteries surrounding the genetic lines of many Indigenous Australians.
She also said advances in so-called precision medicine were set to bypass Indigenous Australians until more was known about their genetics.
She warned that 96 percent of people involved in genetic research around the world were of European ancestry, and Aboriginal people not of European descent and with a different genetic make-up, a European-dominated system would not work.
“Australia at the moment is making big investments in the potential for genetics to improve health care,” Professor Kowal said. “At the moment Indigenous people are not going to benefit at all from that.
“One example is the Australian Genomic Health Alliance (AGHA), which has $100 million for funding from the NHMRC (National Health and Medical Research Council) and three eastern States.
“We are trying to make sure Indigenous health is on the agenda for that kind of investment.
“But because we don’t know a lot about genetic variation for Indigenous people, we don’t know, for example, whether the current medications we have are really doing the job for things like diabetes even.
“We know from other places in the world that there can be important differences which have an impact on diagnosis and the effectiveness of medications.”
Precision or personalised medicine, which takes into account a person’s genetic makeup, environment and lifestyle, is seen by some as the future of healthcare.
In May the ANU announced a new $7.3 million Canberra Clinical Genomics Centre, funded by the ACT Government, which will work to cure patients with diseases by sequencing their genome, or genetic instructions, and finding treatments for their particular condition.
Late last year the NHMRC announced the second biggest grant in its history — $25 million to support the integration of genomic medicine into the Australian healthcare system.
The grant was to fund the AGHA, an Australia-wide network of 47 organisations including research institutes, hospitals and universities. Victoria, NSW and Queensland are each also putting in $25 million for state-based projects.
In the US, the Obama administration earmarked a massive $215 million in its 2016 budget for a Precision Medicine Initiative to pioneer a new model of patient-powered research.
The US National Institute of Health was also charged with setting up a database of one million people who would allow researchers to sequence their DNA and store it for study purposes.
But Professor Kowal said there were “big question marks” over how precision medicine advances would serve Indigenous people.
“I think we have a great public health system in Australia,” she said. “But with the improvements that are coming, with precision medicine, I think I could say there is really no plan for how that is going to help people who are not of European background.”
She said in other regions such as Asia, Africa, Mexico and the Middle East projects were underway to ensure genetic information from those regions and countries were represented in the developments.
Professor Kowal said medicine was even further behind in the area of clinical genetics for Indigenous Australians — the diagnoses of serious inherited diseases such as cancer and developmental delays in children which can run through families.
“Clinicians kind of have their hands tied and can’t make a diagnosis because we don’t know what is causing those diseases in Indigenous people,” she said.
“We only know what causes those diseases with European origin.”
She said the National Centre for Indigenous Genomics — which is overseen by an Indigenous-majority board chaired by new royal commissioner Mick Gooda — has been consulting with communities in WA, the NT and Queensland over the samples.
“We are consulting with communities or people who donated samples or their descendants where they have passed away to see if they will consent to including the sample in the National Centre and or giving a new sample,” she said.
“Those samples will be fully gene-sequenced and the data from the gene sequences will be anonymous and researchers will apply to access it for specific purposes and all the decisions about that are made by Indigenous people.”
In about a year, researchers may be able to apply to carry out studies using the samples.
Professor Kowal said there was a wide range of genetic diversity in Indigenous communities and the more they could learn the better. The big range of languages could be an indicator.
“Most Indigenous people today have a variety of ancestors, not just Indigenous,” she said. “But within Indigenous ancestry there is a massive variety across the continent.
“We know there are massive differences and as an example linguistic diversity is a good indication often of genetic diversity and linguistic diversity across the Kimberley and the top end of the NT, just that region, is bigger than the whole of Indo-European languages.
“There’s massive linguistic diversity and there’s likely to be massive genetic diversity. It really does matter where you come from.”
The National Centre for Indigenous Genomics was set up in 2014 to analyse the genetic composition of Indigenous people in a bid to help improve health care.