Over 7,000 DNA samples could provide information to design medicine specifically for Indigenous Australians, says Dr Misty Jenkins, a medical research scientist from the National Centre of Indigenous Genomics.
“We’re really leading the way in bringing the benefits of science to Indigenous people and working together,” she told NITV.
“That’s reconciliation in action, really.”
Indigenous Australians suffer more diseases than their non-Indigenous counterparts with government data showing they are more likely to live 10 years less than the national average.
Dr Jenkins questions if part of the reason is because most medicine developed from DNA analyses has been based on comparing European samples.
“Medicine has been tested on European people – and we have some of the hugest morbidity and mortality gaps anywhere in the world.”
She emphasises, however, that the potential to design more effective medicine would only be explored if people who own the DNA samples approve.
“The whole point of the centre is that it exists under Indigenous governance led by Indigenous governance, and the Indigenous community are driving how the centre operates.”
The centre is currently conducting consultations with communities in the Kimberley in Western Australia where some of the DNA samples have come from to ascertain how they want it to be used.
Azure Hermes, also on the NCIG board, is travelling through Lombadina and One Arm Point regions in the Kimberley, WA where kidney disease is prevalent, to ask locals if and how they want the samples used.
“They’re quite fascinated about the science and what it can bring to the communities, so what it can tell them about diseases and medications, and the benefits that this might have for their children,” Ms Hermes told NITV.
“A lot of older people recognised that this is a science that will benefit them, they recognise that this is something that potentially could help their children and their grandchildren and their great grandchildren.”
How does DNA contribute to medicine?
The case of Inuit people in Greenland
Twenty per cent of Greenland’s Inuit people appear to be the only people who carry a gene variant that make them 50 per cent more likely to develop Type 2 diabetes than others, an international group of scientists said in a study published in 2014.
The gene variant, known as TBC1D4, produces "around a 40-fold higher effect size than what has been shown previously with other genes," one of the scientists, Niels Grarup from the University of Copenhagen, Denmark, told media at the European Association for the Study of Diabetes 2014 Meeting.
Professor Emma Kowal, an anthropologist and former medical doctor from the NCIG, says studies like this have benefits.
“So for that minority of people who happen to have inherited that particular variant, they’re probably being told by their doctors, ‘Oh, you’re not sticking to your diet, you’re not taking your medicines’.
“But they actually had a different kind of the disease.
“This kind of research can help figure out how to better help those people and stop blaming them.”
How Indigenous Australians could benefit
In Arnhem Land, there’s a particular type of cancer of the vulva that is occurring at a rate 60 times more than other people, Professor Kowal says.
The thousands of stored DNA samples could act as reference data to look for patterns that may provide clues about what is causing the disease, treatment and cures.
But she adds studying genes may also reveal their environment is causing the cancer.
'Other factors cause diseases too'
Social determinants also contribute to greater rates of mortality and diseases in the Indigenous community than other Australians, explains Professor Kowal.
“We know that people who don’t have access to healthy food, who are not in environments that support them to have exercise, who don’t have access to money, to education, who…have very high levels of stress from early death and from violence and all sorts of things - we know that that and poor mental health and poor access to health care, lead to chronic disease, particularly heart disease, kidney disease.”
Further, a person's gene's interact with a person's environment.
"Genetics and environment are tied together. Your environment can have influences on your genes," she adds.
Are there consequences to genetic health tests?
Under section 55-1 of the 2008 Private Health Insurance Act, Australian health insurers are forbidden to discriminate based on genetic pre-depositions that may impact their health.
But life insurance companies may.
Standard 11 of the Financial Services Council (FSC), representing the life insurance industry to government, regulatory agencies and consumers, requires that the results of any previously undertaken genetic tests be made available upon request.
“If people are involved in research that could give them clinical information, they should be advised about the possible implications for life insurance,” says Professor Kowal.