Video Transcript

ANU: What is Indigenous genomics?

I really believe in this science, and I think that when we think about closing the gap for Aboriginal and Torres Strait Islander people, you have to think that genomics can play a part in that.

We're trying to build a biobank for Aboriginal and Torres Strait Islander people, essentially a library of indigenous DNA samples.

Understanding of what genomics and the power of genomics can do for our people, for our future generations, and close that gap.

The National Centre for Indigenous Genomics everyone here has similar passion in terms of they want to make a difference. They want to contribute to the society, and they want to make sure that nobody is left behind in the benefits of genomics research.

Being an indigenous woman whose family is in this collection. We treat everybody as if they're family right. Genomics data is essentially the readout of individual's DNA. You get one copy of your genome from your mom and one copy from your dad, and that makes you.

As humans, we share 99% of our DNA with each other. So the interesting bit lies in the 1% variation between all of us. And sometimes that little variation is enough to give us clues about where to look for a certain disease, a unique trait, or how we adapt to certain environments.

We're getting more and more targeted information that will then lead to better treatment options. Or be able to solve the problems a lot quicker. In genomics, there's a big push for everything to be open and accessible for every scientist in the world to pretty much have access to genomes.

And that's a real problem when it comes to indigenous genomics for ethical reasons as well as cultural reasons.

We talk about the good things and the bad things and the ugly things that can come with genomic research.

NCIG holds a collection of 7000 historical blood samples that were collected between the 1960s and the 1990s. We don't really know too much about the consent process for those samples. We don't think that informed consent was given.

Having samples away from country has real cultural significance and personal significance for people. So in our culture, it would be that's part of someone's spirit, that's part of their body that still holds them there and their connection.

And not knowing it was here can be quite emotional. I would say that initially, people will be shocked and upset to learn that these samples exist, and I think that's rightfully so.

What NCIG are trying to do and what we are doing, and why it was established, was to go back to communities and let them know that we have this historical collection of samples to talk to them and ask them what they want done with those samples.

And it's a responsibility that weighs very heavy on my shoulders, but it's a responsibility that I take very seriously. Whether that's to destroy a sample, repatriate it back to country, or to collect it and put it in the biobank.

Whatever that decision is, I take it really personally. I guess the history behind research in communities hasn't been that great for Aboriginal and Torres Strait Islander people.

Where it's been, I guess the science of extraction, taking all the time and not returning or giving back. As individuals, as communities.

You know, it's very important for them to have a voice, have, data sovereignty. We give them that space, we give them that time, and we give them that assurance that whatever it is you decide to do, we will respect that decision.

Outreach is really different. It's one of the things that we're most proud of. It's probably one of the things where we're best known for this.

Data must be understood in the context and, the priorities of communities who have given us the data must be at the core of it. I love going to community. It fills my cup.

I love being on the ground talking to Aboriginal Torres Strait Islander people about genomics. I love hearing people's stories, and I love watching them take ownership and think, really think about what it is that's right for them and their families and their communities.

I think that's a big, big, big part of it. Not so much the talking about genomics. It's sitting there and listening, listening to their stories, listening to the opinions and understanding where they're coming from.

We really try to invest a lot of time in having open and honest conversation with people

about what it would mean to be a part of this research. Genomics data is very powerful in not only diagnosing and treating disease, but also in the future it will be powerful in predictive work as well.

As an Aboriginal woman who's from Yarrabah working in this space. I know that there are so many people within my community who are dying from preventable illnesses and diseases.

There's a higher rare disease as higher kidney disease, there's higher, heart disease rates for Aboriginal and Torres Strait Islander people than there are for non-Indigenous people.

People are really sick and tired of going to funerals for people who are dying from preventable illnesses and diseases. The hope is that we can be trusted to responsibly do indigenous genomics, to bring whatever benefits that the community wants from our research.

The decisions around how we utilise this genomic data is definitely, centred and very well into the hands of the people who have donated us this data for research.

I think it's super, super important for the true owners of the data to make the decision about what it's actually used for.

When we talk about genomics our Aboriginal communities are already thinking about genomics and DNA, right. And it's not in the language that scientists would use, but we look at it through our kinship system or our moiety systems.

They understand it straight away. They know because they've already developed that knowledge. It's really interesting when you go into communities and we're talking about genomics and genetics. And they're like, oh, is that like our kinship system about who we can marry and who we can't marry?

That tells us that the knowledge is there. There needs to be like a bringing together of those two understandings. We want Aboriginal people to be the decision makers and the knowledge holders.

And that means also being the knowledge holder of our genomic information. So when people discover that, okay, you can get your genetic blueprint and you can do data analysis on your own traits, and you can discover what makes you, you.

Bioinformatics is a branch of, science where we combine biological data sets and computational methods and statistical methods to derive meaning out of the biological data sets. Basically, design systems that use high performance computing to turn raw DNA data into results that can drive research and answer big biological questions.

It's like waking up every day and trying to solve a never-ending puzzle that no one in the world has ever done.

We lie at the intersection of biology, computational science, statistics, and even to an extent, mathematics as well.

NCI is a very powerful resource that is integral to everything that we do. Today, we are processing around 200 samples as we speak at NCI. Tomorrow we might have 500 samples or 1000 samples. Typically, we generate in excess of a terabyte of data from a single person.

What supercomputers allows us to do is process large quantities of data. Technology is a major driver there. The physical technology has changed so much.

The questions might be the same, but we're able to answer them in a different way now.

We're able to have really great conversations with people about genomics and what it would mean for our future for indigenous people.

I love this job. I love NCIG, I love the work that we're delivering on. I could never in my wildest dreams even imagine that if I code, I can sort of contribute to the indigenous communities and their health care.

The potential for this technology to answer questions that I've always been interested in, medicine, cancer evolution is pretty powerful.

We know that when we look at indigenous science and we look at indigenous genomics, that the benefits won't just be for us. It would be for all of Australia.