Speaking of Science: Towards a National Indigenous Genomics Agenda

In this Speaking of Science webinar, we were joined by internationally acclaimed Aboriginal doctor and researcher Professor Alex Brown of the Telethon Kids Institute and the Australian National University. Professor Brown discussed Indigenous genomics, and how his transdisciplinary program of research is helping to improve health disparities among Aboriginal and Torres Strait Islander people.

Listen to our insightful conversation with Professor Brown as he shares how this unique program is synergistically building and extending Indigenous leadership in Australia’s health and medical research sector.

Due to technical errors, there are some breaks in audio which are noted in the transcript below.

Video transcript

Professor Steve Wesselingh  0:02  
Okay, I'd like to welcome you, everyone, everyone in the room, but also everyone on Zoom to our third Speaking of Science, and very excited to do that we have a fabulous speaker today. But before we begin, I'd first like to apologise, we're a little bit late, we had an internal meeting before this, and it ran over a little bit, so I apologise for that. And also, we'd like, particularly to acknowledge the traditional custodians of the land we're meeting on today, the Ngunnawal people in Canberra, but also acknowledge that people around the country are on traditional land as well. I'd like to pay my respects to their elders past and present, and acknowledge Aboriginal and Torres Strait Islander people who are in attendance today, both in in the room, and also on Zoom. Just a bit of housekeeping, there is an opportunity to ask questions at the end. And we can either do that by putting your hand up, or by entering your questions into the Zoom, question and answer and we'll take that on board and ask those questions for you. We also record the webinar and so that can be it will be available on the NHMRC website. So people can go back and watch it again. It will be like watching the Crows when the Grand Final in 1997. But, but you can go back and watch it again. Or if you don't get the opportunity to see the whole thing you can go to the website and get the session. We've also had great feedback about the Speaking of Science series and and it's really going very well and had some terrific speakers. And then today, we'd really like you to continue to give us that feedback, and continue to tell everyone about it so that they can watch the next one. In regard to today's Speaking of Science, it is in regard to Aboriginal and Torres Strait Islander health. And that is something the NHMRC is totally committed too. And and in fact, we've had some goals we had a goal of 5% of the MREA to be spent on Aboriginal and Torres Strait Islander health and we now have up to 8%. We also have a goal of 3.4% of all of our grants to be led by CIA's who are Aboriginal and Torres Strait Islander. And we're not quite there yet, but we're certainly working very hard on that. We also run an Indigenous speaker series. And this time what we've done is actually bring together our Indigenous speaker series with our Speaking of Science, bring them together and really showcase one of Australia's leading Aboriginal and Torres Strait Islander researchers who is Alex Brown, someone who I've known for a long time. Alex is currently a professor at Australian National University, and also a member of telethon kids Institute and holds an appointment across both of those institutions. As Professor of indigenous genomics. Alex trained as a went to medical school at Newcastle University, and then got a PhD, but has had a wide range of experiences which really I think helped him develop. As one of Australia's leading clinician scientists. I know he spent a lot of time working in ICU as an example, did a lot of communicable diseases work has worked in the epidemiology space, but really has has led an enormous amount of work in understanding chronic disease in Aboriginal and Torres Strait Islander communities at primary care level in hospital settings, but it's also run controlled trials, randomized trials in pharmacological and non pharmacological interventions in chronic disease. And I was the inaugural director of the Aboriginal Health Equity theme at Samriddhi when I was at SAHMRI. And just a fabulous job in developing that theme over over 10 years. And the amount of work that came out of that was was amazing. And since that time, he has moved on, and is now leading Australia's genomics effort in regard to indigenous health. And I'm really excited about the work that Alex has been doing in that area. I'm really excited to hear about it. So please welcome Alex to tell us all about indigenous genomics.

Professor Alex Brown  4:22  
It's a great pleasure to be here. Thank you for the invitation. I was going to pick on Steve who is harking back to the days of glory of the Adelaide Crows but I follow Parramatta and it's been a bit longer for us so I can't say too much. I'll try to share my screen and hopefully then we can get into the the the meat and potatoes Ladies of our conversation. My name is Alex Brown, from the south coast of New South Wales. So if you just fly directly east of here, you'll hit your own country, which is where my family and ancestors are from, in that respect to lots of pay my regards to the traditional owners of the country we're meeting on and reach out across the cyber world to all of the Aboriginal and Torres Strait Islander people that are dialed in. And everyone else, thank you for indulging me. And allowing me to talk through some of our work which has developed over the last little while, I thought I'd talk about the emerging efforts in the context of genomics in indigenous communities and indigenous health, which is posed enormous challenges for us, not just from a scientific perspective, but from an ethical and cultural and legal and social frame of reference, as well and trying to traverse this very rocky terrain is something that we're trying to bring together a national response to, because we can't possibly do it alone. You ask why is the story of genomics a difficult one to have with communities, the reality is that history casts a very long shadow, in the context of science in indigenous communities. Without any doubt, science was weaponized against the interest of Indigenous Australians from the moment of colonization. Now that history looms large, and as makes our job as indigenous researchers and indigenous scientists, even more difficult because we have to overcome that lack of trust that exists between indigenous peoples, and the way in which science has historically been done to on Indigenous Australians. I say it was weaponized. The reality is research, researchers and science was used to identify in some sick way that not all humans are created equal. And it was covered for the lie. That was terror analysis. They weren't really people here, we can take what we want. And this is a great challenge that we face in talking with communities who have very long memories, as you would expect from an oral tradition that costs back 65,000 years or longer. The other challenge we face in taking on this conversation around genomics, is what expertise do we have and what is our research focus largely in the context of Aboriginal and Torres Strait Islander health. If you look back at expenditure against indigenous researchers game era, over the years, the vast majority has been in a population health field, and appropriately sized. But it raises questions about how do we traverse these different worldviews, these different ways of working these different ways of researching and understanding. precision health is very much about the minutiae of the micro levels. Whereas in population health where our expertise tends to lie, although that's changing, is in the macro social phenomenon. The populations that exist, are interested in global diversity, and understanding context, rather than just the gene and how it functions. were much more interested in prevention. Now, genomic can be applied in this context, but to date, it hasn't quite found its feet in a Prevention Agenda. So much more about treatment. We're talking precision medicine, about open access, the importance of data, the importance of data sharing, this raise significant challenges for indigenous peoples about open data about how data is used about who's in control, and about how we can make the most of that asset to improve the health and well being of Indigenous Australians. And then we have these other more esoteric challenges. How do you actually reconcile the social determinants of health which drive health inequalities for Indigenous Australians? And is investment in genomics, the right use of scarce resources? And these are truly important questions for us to wrangle with. And there may not be perfect answers to any of those questions. Now, what do we know about what's happening in genomics across the globe? Many of you if you've heard anyone talk about genomics, most people will give you a slide on how underrepresented many ancestrally diverse communities are in the conduct of genomics research and the vast majority of individuals involved in any of the genomics work across the world of European backgrounds. There are significant calls to increase diversity. We'll touch on that in a second. They might say Oh, well, does it really, really matter? The truth Is it absolutely does, if you want to apply what genomics can offer in the context of medicine, in precision medicine, more specifically, you're not including understandings of diverse communities, the tools you build don't work as well in the diverse communities in which you seek to deploy them. And this is certainly in the context of themes like polygenic risk score, where you add up risk associated with a whole range of variants that individuals have. If you deploy it, built in one community and apply it to another that's different, it doesn't work. And so we have to grapple with this question of whether or not we can incorporate our understanding of the social world into the way in which we conduct science. But perhaps more importantly, can we apply the lens of genomics to reduce inequalities in the first place? And that's a much bigger, contested and challenging question. Now, most of the calls globally are well, we'll just include a whole bunch of ancestrally diverse people in our databases, and they'll get better. This inclusion agenda, although important is not enough to deliver an equity agenda. We'll try to work through that a little bit over the next few slides. As a consequence of a lack of indigenous involvement in genomics research, there's really very little date that we have in terms of genomic sciences deployed and applied in the interest of Indigenous Australians. What we do know with the small pockets of research that have occurred, is that indigenous Australians are pretty important. We are linked as Indigenous Australians to the first dispersals of humans out of Africa. We have clear evidence from genomics data that we've been here, uninterrupted until very recently for at least 50 to 60,000 years, the echoes of that history are housed within our DNA. And as we already understood as indigenous people, we've been here forever. Science is just starting to catch up Weldon salts.

And what do we know about our genomic story, this is a slide and data provided by the National Center for indigenous genomics here in Canberra. from Harvard and colleagues, we know that we're particularly unique. If we look at our variation, about a quarter of our variation, as seen from genomic data is unique to Indigenous Australians, but not just that we unique from populations across the globe. About a similar amount. We are unique between communities. So we don't just have uniqueness from the rest of the world, we have our own particular uniqueness across our communities, as is very important for a whole bunch of reasons. One, you need to understand that heterogeneity is the norm, not the exception, we are different. We're not just one big blob of indigenous SNESs we are unique, we are different, we have our own ways of understanding the world and leaving this as representative email, genomic or a genetic architecture as much as it is in our culture and our language. Similarly, if you're going to deploy stuff that should work, you need to consider these differences and how they impact. [Technical error - break in audio.]

Now one of our great challenges here is having conversations with communities about why we should do this. Science has a habit of involving itself in its own self absorption. Scientists do that too. My apologies in advance and retrospectively for all that I've done in that vein, my Self. But we have to do much better at negotiating with our communities, whether they be indigenous or not how science makes a difference to people's lives. That's the fundamental important job of us, certainly in a translational perspective, but also in the application of what science offers. And so we need to have conversations with communities about what's in it for them to be involved in science and research, particularly in the context of genomics, where there is still a job to be done to build trust with communities. For us, as Indigenous Australians benefits might include things like being able to tell our story, as the first peoples on this continent 65,000 years a long time to hang around, is something very wonderful, unique. And that story of survival and endurance is an important story to tell the genetic story can help answer that narrative very strongly. We should be able to use the development and deployment of genomic science and research to actually build trust and to define the terms of engagement. How can we do this the right way? If we do that, we might find that listening to Indigenous Australians might provide better ways of doing business with all of our communities that we work with whether they be indigenous or not. It can certainly help with more accurate diagnosis. We are starting to see more and more precision prevention opportunities, the ability to predict risk in individuals from genomics. And clearly the efforts around precision therapeutics and precision treatments. That the future requires that we are also building benefits around our workforce, how can they use genomics in their day to day practice, however they incorporate or integrate it into the way in which we do our work in a healthcare system. To do that, we need data systems, data operators, principles around data management and data governance. We need to do a better job of building the right workforce and the right capabilities to make the most of what genomics can offer the future of medicine. But more importantly for me is we should be able to utilize it to develop more equitable policy. And our fundamental objective should be to use the power of genomics to reduce inequality. So that leads question when it's into the question, when can this precision medicine thing actually improve health outcomes as quite an easy picture. But there are deployment opportunities for precision medicine across a whole continuum of understanding health and well being and responding to it. It can help with I mentioned before risk prediction. It could be used to better identify risk stratification around prognosis, who's going to do better or more or poorly in response to a treatment or therapy being deployed? How will they respond to that? Can we use it to make more accurate and more amenable diagnoses to target the right treatments? Can we use it to identify new or repurpose to therapeutics? And the answer to that is sort of Yes. But to get to that point, there's still a lot of work to do. So we apply this lens to a condition say, cancer. How does precision medicine play in the context of the key pillars of a cancer prevention or management agenda? How do we reduce the burden of disease in the context of a broad group of cancers, precision medicine can apply. And in many ways it's actually playing today is becoming standard practice. It is becoming embedded within the way in which our healthcare system responds to the specific diagnoses of individual patients. It can play in the context of prevention and screening. It can play in the context of diagnosis and treatment. And it should be able to help in the management of individual patients and more personalizing their care for the future. However, when considered in the context of the patient group or a population, it doesn't have a fair sack of the serve, so to speak, at the entire healthcare continuum. What does it mean? Well, in the context of Indigenous Australians, and this data is actually based on some figures put together by some Marty colleagues, right across the continuum of care for cancer. Indigenous peoples, whether they're here in Australia or across the globe, have higher risk factors. Inadequate prevention, delayed diagnosis, less than access to appropriate therapeutics and poor outcomes? And the question we have to answer is, can we deploy genomics in these contexts? And will it increase or decrease inequalities? As we as indigenous peoples experienced them? Will it deliver equitable outcomes? Will it enable us to more personally prevent? What's happening with that individual? What are the ethical, legal, social and cultural considerations to deploy this at scale? Within our healthcare system? Who's in control? Can we get access? We may find a druggable target in an individual indigenous patient with cancer, can we get the treatment that they need, according to their genomic profile? To have the right workforce? Can we deploy it in the models of care that we have, as it currently stands? Well, maybe that's the question. So how's it play in the context of say, the three leading causes of health inequalities for Indigenous Australians touch on cancer, its primetime in several areas of cardiovascular disease and care already, the way it is deployed individuals within a population with particular diseases, we can utilize information or data from a whole range of sources, whether that be clinical or psychosocial blood tests, imaging, wearable tech, and integrating data from electronic health records, for example. Also, integrate that information with a whole raft of genomic information, whether that be genetic data, epigenetic data, transcript, omics, get from RNA and proteins and metabolomics. And drugs, you just add ohmic, on the end of everything, Iran. And it's being used in the context of cardiovascular disease now, and hopefully will provide novel solutions moving forward in risk prediction, in diagnostics, in the right treatment approach for individuals, prevention opportunities, it could be used to delay the progression of disease, and hopefully be deployed in the context of identifying a biomarkers of disease before disease is established. Now, the benefits, as researchers are really good at coming up with a list of benefits from their science, we're very good at that it's part of our job to sell. The peer review is how important our stuff is compared to everyone else's precision medicine, and genomic medicine is no different. There are a raft of potential benefits.

And more an earlier diagnosis, developing new treatments, understanding variation, clinical phenotypes, clinical stories, reducing side effects, making the drugs we give work better, reducing complications, improving survival, the list goes on. Unfortunately, the challenge exists, will it increase inequality? And how do you ensure the benefit or the potential benefits are actually delivered? And that's the challenge before us. And this is the same in the context of diabetes. What's possible is precision therapeutics, more precise treatments, better prevention, and helping with reducing risk across the continuum of care. But we've got enormous challenges and questions to answer about how we do this scale. We can deploy genomics in the context of prevention, whether that be in a primary prevention context, that is people without disease but exposed to risk. How can we reduce or mitigate the impact of that exposure over time to reduce the development of disease? Those who have got disease but we haven't made a diagnosis yet can we bring for that diagnosis, get the right treatment in play? And similarly, those with the disease, how can we reduce suffering and can precision medicine play? In that context? We think yes, but we don't have all the answers yet. And then we've got the patient [Technical error - break in audio].

Welcome back now for something completely different. I watch too much TV, as a young person. So the other questions swirling around my head, I touched on the data storage, this is an important one. There is a sense of inevitability about the requirements to share data. funders are requiring us to share data. Fanus is expecting us to share data. The Journals, which we seem to publishing are expecting open access to data. These are challenges for indigenous people [Technical error - break in audio].

Under what circumstances to who should we share in foods benefit? Are we allowed to share? Do we ask people? Did we consent for these realities? How could we, from a technical perspective, share the data in which data and under what formats and for what purposes? What will we share if we could? And what do we need to develop to help us decide as communities as ethics committees as participants what the right choices might be? And we've learned, in some ways, along a very slow path of the importance of thinking through these emerging issues in the context of data and data systems and genomics has just pushed us further down this path. Because of the centrality of big data to the work that we're pursuing, that I mentioned, there's a very strong global push for diversity. At this stage, it's looking like, hey, we just need some brown people in our databases. And that's just not enough. Is this fear? Or is this new by colonialism? These are questions indigenous scholars, and indigenous communities and indigenous governance architecture has of what's happening. We have mechanisms and guidelines for how we can make data more findable, Accessible, Interoperable, reproducible the fair principles. But we also have indigenous views on how that data ecosystem and system needs to work more broadly. And that's from a kid perspective, indigenous frame of reference for what data is and how it can be used, and how we can protect indigenous peoples rights in that framework. How does open access challenge our notions of appropriate indigenous protocols? Should we share or not? Who's in control? Who has agency over those decisions? How we protect indigenous IP and traditional knowledge as in this, this approach? And what is the benefit sharing look like for us? So the last one, and that's all finances. It sounds very, very complicated. Why don't you just tell us what you do? Well, maybe the question is as a public health physician, as an indigenous person who's always been worried about this genomics agenda, how the hell If we get started, and we started working with Aboriginal communities in South Australia, and we had spent significant time working with communities about what mattered to them, what their priorities were what worried them, what kept them up at night, and what they wanted from research. And part of the story was about the importance of diabetes, which was cutting sway through communities from a whole raft of complications and poor outcomes. And then conversations we had with communities was not too different from what we could see in terms of the epidemiological data, we help to curate and collect over many years, extremely high burden, a very premature onset of disease and communities, aggressive complication development, and high burden carried by communities and individuals and families. And this picture of intergenerational risk transmission from type two diabetes in pregnancy of mum, through to the elevated risk of developing type two diabetes, for children born to that mum. And the question was, does genomics offer us anything in this context? Fortunately, we will be we were very lucky to receive support from the inaction must see to develop the prophecy study or more appropriately referred to indigenous communities, the Aboriginal diabetes study, because that's what it was a longitudinal cohort study of multi omics deployed in the context of understanding diabetes. And the aggressive complication development that we see in Aboriginal communities certainly is in South Australia, that frame of reference, were able to recruit just under 1400 adults from 17 communities right across South Australia. We undertook detailed baseline assessments of clinical phenotype, environmental data, stress and worry, diet, nutrition, exercise, and multi omics examinations, looking at genetics, epigenetics, transcriptomics, metabolomics, and proteomics. And we add up just in the field, as we speak, during wave two follow ups at five to six years following that initial baseline assessment. And the job here is to understand how all of these features can drive the development of diabetes, and how those with diabetes how we can look at signatures to understand how we prevent the development of aggressive complications. What sort of research questions Can you answer with such a comprehensive set of data? Well, whole bunch of stuff. And that's the job. How do we use genomics to understand and prevent Type two diabetes and its complications is our overarching objective, but we can ask a raft of other questions. What are the links between the social environmental world with clinical risk and the development of disease? Are there specific genetic causes of type two diabetes and associated complication phenotypes in our communities? How do genomic markers help us understand why some people have very aggressive disease and others do not? How do we use genomics to prevent the development of diabetes and its complications? Next, we're really funded through only one telephone kids Institute and our ability to engage with an attract category one funding was really to develop a research unit, which is based in Adelaide, the new telephone kids Institute indigenous genomics group, our four core jobs here to provide some national leadership about what we do to utilize genomics to understand complex disease and how to prevent it better. To deploy genomics in the context of precision medicine in indigenous communities. The vast majority of our focus in that domain of work is at the moment in cancer has experienced in indigenous communities. And therefore the thinking work around can we deploy genomics as a tool to understand this symbiotic relationship between healthy people and healthy country or on the second piece was a synergy grant funded by NHMRC with a fundamental focus on empowering communities to make their own decisions about whether or not they wanted to be involved in genomics, starting with indigenous knowledge systems, and working through the development of capacity and expertise in data sciences, our deployment of multi omics in the context of biomarker discovery and understanding the pathophysiology of complex disease, to record and document the uniqueness of indigenous peoples genomic storage and genomic architecture and to work closely weigh in collaboration with health system partners, communities, and a broad church of researchers across the country.

The next piece was an MRI fair funding program of work to move beyond what do we need to make sure the foundation stones and push the research community to work through what it's going to take to ensure that genomics delivers the courts? How do we ensure benefit in what genomics offers, we first have to establish the network. The job now is to enhance indigenous peoples leadership of genomics to identify and respond to the key policy matters in terms of how health systems can integrate genomics, but also how genomics is done from an ethical and cultural perspective, to define and model and when necessary, build best practice approaches to the conduct of the sort of work, to build capacity, and to lay out the plans for the future about what it's going to take to make sure genomics does its job and doing this benefit to our communities. Well, that looks like we've set up nodes right across the country, in Queensland, and Sydney, in Canberra, in Melbourne, in Adelaide, and in Perth. Each of those nodes have to establish indigenous governance of what's happening in indigenous genomics for that state to identify where key policy matters to work through what data systems are employing, and a very strong focus on capability and capacity development for indigenous genomics. But he has also been asked in inverted commas, we'll say pushed. How do we define a particular user case scenario for genomics that could deliver benefits in a more proximal sense? And what's it gonna take to deliver that? In Queensland, the latest programme of work around pharmacogenomics, New South Wales around precision medicine, Victoria leading the immuno genomics component of work, our ICT friends through the National Center for indigenous genomics focus on gene and biology, and our wa friends leading the charge in rare diseases. So this is sort of the reason to show you this is if you want to build a national network, you have to have a good strategy. And it takes a long time to work through all of the teething problems across large scale networks and collaborative frameworks.

What we want to do is not just talk about how tough things are for Indigenous Australians, no matter how tough they are. We want to push back against this narrative that Aboriginal people are just sick and horrible, and that I listen and I need the right food, and they don't do what we tell them as fancy pants doctors. We don't spend enough time asking the question what indigenous people offer the world. And we want to use genomics as a way of examining that conversation as much as anything else. And the reason we're interested in this, in our conversations with communities is I can go in and tell people about what a sequencing machine does and what it means and what DNA is made up of and what it actually represents. And what all of those letters and what are all those bioinformaticians sitting in dark rooms do. Or I can ask communities what they understand about Genes and Inheritance and narratives around kinship and connectedness across generations. Because we want to start with what indigenous people know. And work with them to improve all of our understandings to ways about how we can proceed together and then we are If you can't leave on a country, as tough as Australia for 65,000 years, I want you to work some stuff out. And indigenous people have this very, very detailed approach to kinship, which regulates who marries who? And who can have babies. And the question is, Has this been a profoundly protective approach the small populations over 10s of 1000s of years, to look out for one another and construct a very clear sense of health and well being across generations? Over time? We think, yes, the job is to have those conversations. Why do we want to do it? It's a good way of raising awareness. It's a good way of preserving and celebrating and protecting Indigenous Knowledges. We want to build shared understanding, but more importantly, we want to empower communities to make their decisions about genomics. So where are two or three years ago, if I was to lay this out? These are the sorts of things you will need to be thinking about in terms of conducting indigenous genomics. We need a reference genome that have one realities, we may need multiple, but we can talk about that another day. Are we happy to share data? Probably not yet? Are we comfortable about the conversation about open access to all data? And we've got any public trust or social licence to do this work? Absolutely. No. Do we have biobanking capacity? Yes, we sort of do. Is there any genetic literacy in communities? No, there's not. And we've not invested in those conversations with our communities at all. Do we have clinical services that understand indigenous health? A bit? Yes, we do. Have we invested in capability data, bioinformatics capacity to enable us to do this work? No, we hadn't. But a few years later, we're getting there. And there is an appetite for communities and the research community to talk about indigenous genomics and how we do it. We're not far away from having at least a tunity assembly and potentially a reference genome this year. We are talking about the mechanisms to enable data sharing the right way. Communities are happy to have conversations and we are able to build trust, it's growing. It's not done yet. We have foundations to the approach of how we biobank indigenous samples and how we curate and care and what our custodianship relationships, our community literacy around what genetics is growing, clinical services are growing in your understanding of how to provide care to indigenous people. And we've begun the long and painful journey of capacity building in bioinformatics, which is hard to do. We asked the question, not just can we all have some please? Can we be included in your database? An equity agenda in genomics requires so much as the built on the right principles, trust and empowerment and respect. It has to be guided by ethics and cultural protocol, and a clear articulation of what benefit needs to look like. We have to build the right foundations, the technology, the workforce, the infrastructure, the legislative framework, where necessary, the policy that will enable this to be done the right way. But we also need to push genomics to deliver equity, not just equity of access to genomics. Can we have a research agenda that actually deploys genomics to reduce the inequitable health outcomes of conditions that drive health inequalities, that gross example of heart disease, diabetes, and cancer? And then how do you deploy that at scale? What do we expect in the next few years, we should have a very much clearer sense of complex disease in our community and how multi omics may help us make sense of that. We're trying to build a Precision Medicine Platform with partners in New South Wales. We will have a raft of resources around genetic variation, and also ways of doing this work across jurisdictions and across geographies more globally, we will have a national ecosystem playing and our agenda moving forward is not just an equity perspective, but can we deploy genomics in primary care. And as I mentioned this movement from well, we can include you in some stuff through we want indigenous people to be in control of their own destiny as our ultimate objective. It is a sovereignty agenda. We understand that that's a very uncomfortable word for many non Indigenous Australians. Too bad. So sad. We need our stories to drive the agenda here. It is our connectedness album. Well, on our turns under our control, that will deliver equity as we require it as Indigenous Australians as the first people in this country. I'll leave it at that. Thank you.

Professor Steve Wesselingh  40:19  
Thanks very much Alex. Fantastic, as always, but this is really visionary. This is is truly fantastic. I guess maybe I'll open the question. So we might have some questions online, anyone in the room? What, what's what do you need to do this?

Professor Alex Brown  40:37  
This is a critical question. Thank you for cutting to the chase. Even when people say it's not about the money, it's always about the money. Now. That's research for you, you know, you guys know you're at the other end of us begging and scraping constantly. There's a couple of things, we really need a mandate from communities to progress this agenda. Right. So that's really important. And we've got work to do to work with communities so that they can choose yes, they may say yes, but only in these circumstances, they're the conversations we need to have. And when we're having them now, we need a really well equipped workforce, both in science and research and data systems, data sciences, as well as the translational workforce that can take the benefits of genomics and what it has to offer and deploy it in their day to day practice. And we don't have that, we need to make sure that genomics is a part of our undergraduate training programs that were exciting the next generation of people coming through high school and into university in graduate programs to want to talk about this and want to learn about it and being engaged in what will be the future. We need the right policy settings from government to protect, but also enable the work that we need to do. And we probably need a pretty large scale investment over time, so that we can actually take these plans, which are well in train and get it done.

Professor Steve Wesselingh  42:18  
Thanks. Thanks, Alex. I just if there's anyone online who wants to put their hand up for a question, we'll we'll see that and we'll get you to ask the question. Or if there's anyone in the room who like to put their hand up and ask a question, please do. And there's one there. I'll take bring in the microphone.

Speaker 1  42:40  
Hi, Alex, thanks for a great presentation. I wondered if you could expand more about how Indigenous Knowledges have informed your research?

Professor Alex Brown  42:49  
Well, that's a really, really good question. That's a very hard question to answer. It's like saying, Well, how do you breathe, right, you just do. Our work is informed by indigenous knowledge systems, because we are a part of that ecosystem, and our entire lives are part of Indigenous ways of knowing and learning across generations. So we are part of that, as much as we are researchers looking back into that, if that makes sense. So how do we, the question isn't how do we incorporate indigenous knowledge systems within our work? For me, the more important question is how do we protect rights and interests of indigenous people and protect indigenous knowledge from exploitation? And that's a much more complicated and vexed question. The Australian IP framework system doesn't work for protecting indigenous knowledge is you can't patent it. You can't protect IP. Now understand, that's a legal framework, but that doesn't necessarily fit within a cultural perspective. So we've got work to do in Australia with how we actually protect indigenous peoples rights is the Nagoya Protocol that can protect non human genomics in some sense, and the information housed within that we have very little that protects people's interests in genomics efforts beyond consent, which is often imperfect, a legislative set of frames, which don't actually speak directly to the genomics agenda. The way in which we need to move forward to ensure indigenous people are protected and indigenous knowledge is protected is to grow indigenous people's capacity, expertise and ability to deploy their knowledge in the way that we do stuff so that they're in control from top to bottom. That's a tough ask, but we have to do

Professor Steve Wesselingh  44:54  
Thanks Alex. I might, I'm really interested in your sort of your pathway. You know, you started as a clinician, and clearly a person who wants to make a difference. And I know that about you. But you started thinking that clinical work was going to make a difference. You moved from clinical work to public health work, and now you're moving to genomic. So clearly, you must think that this is the pathway to making a difference. And closing that gap. Would you want to just comment on that?

Professor Alex Brown  45:25  
Yeah, so simple question Steve, you probably know half of the answer. But um, I have to say, for for over a decade, we've watched genomics coming down the train tracks and indigenous peoples from from a long way off. And I'd always hoped somebody else would step up and actually take it on, didn't quite happen that way. And I think indigenous people have always had concerns and worries about what genomics is, and what is going to mean. And is it scary? And is it going to scew us over. And I've carried those concerns myself. And they really started with the Human Genome Project, which was far more about exploitation than it was about discovery, and reducing health inequalities experienced by diverse communities. The reality is genomics is coming at us whether we like it or not. And the question is, how do we actually make sure communities are prepared, as well as how do they have an understanding to make their own choices. And that was us. That was our job that we accepted to be our role is to not necessarily, I wanted to be the greatest genomic sciences scientist, I've just learned to spell DNA, don't tell anyone at the NHMRC that. But I know how to bring people together. And we know how to apply a population health perspective to how science can do its job to deliver benefit to communities. And that's what I saw as my job to do. So I started a career in intensive care and anesthetics, I was very interested in pathophysiology. I then went to public health, because I knew that I needed to make a broader contribution than just a single patient at a time and I felt a very strong urge to deliver that agenda. And that hasn't changed. The good thing about genomics, it offers a bit of both. There's some pathophysiologic, it's been through and some fundamental biology that I'm really interested in, and my passion has been re-enthused. There's also a population health mindset here and a public health view of where genomics fits in to the health and wellbeing of populations more broadly. And I think we can marry those two parts of my life in a particular field. So you've only got a few big things in you in your career. This is, this will be the one, probably the big one for me over the next 10 to 15 years.

Professor Steve Wesselingh  48:02  
Thanks. Thanks, Alex. Alan.

Speaker 1  48:06  
Thanks, Alex. Indigenous communities overseas must be wrestling with these similar sorts of issues, just wondering, there's been a lot of interchange with them. And those ideas.

Professor Alex Brown  48:16  
Yeah, so that that's been an ongoing relationship for the last sort of 15 years. Particularly in reflection from the Human Genome Project, indigenous scholars and communities from largely across the Pacific got together. And this is where the indigenous data sovereignty agenda was born, which was we are we need to protect our rights and interests. We can do it from a bioethics lens, we can do it from a sense of what needs to be done to protect data for our communities. So in many ways, that was the birth of the indigenous state sovereignty movement, will thank the Human Genome Project for that it done well, that has grown now to a much more comprehensive approach across many key pillars of genomics efforts. And the good news is we've all got complementary expertise and skill sets, whether that be from our Canadian, First Nations, friends, Native American Indian communities, our friends in Hawaii, friends, in Atarot, we all bring to the table, different skill sets and we're progressed across each of those areas, differently. Some of us are leading more of the precision medicine angle. Some are really strong around biobanking and ethics and community governance. US friends are very strongly in data data systems, but also data futures and how it can be unlocked to deliver benefits for communities. First Nations friends in Canada, very interested in rare disease. Developing a whole raft of efforts around bio banking and precision cancer. So the good news is we've been working together for 15-20 years already. We all know each other. We've all had grown each other's kids up. So we're family. And we do a lot of this work together, because we need eachother.

Professor Steve Wesselingh  50:23  
Can we go to that person.

Speaker 2  50:32  
Thanks. Hey Alex. Deadly talk as always. Do you want to jump in here DeLorean for a brief moment and travel to the future? What do you think the most exciting thing that we'll see in maybe five to 10 years is in this space? Do you think AI might be might be sort of a big thing or something different?

Professor Alex Brown  50:52  
Yeah, again, thanks Adam for that question. Again, our technology we sort of can't ignore. The question is, how biased will AI be against the interests of indigenous people and other marginalized communities, we already know the algorithms operate in strange and funky ways, and have built in, for some reason, inherent bias, I can tell you that I for some unknown reason I can, I can hazard a guess at some of those reasons, we have a biased set of inputs into those algorithms that drive how the algorithm actually works. Of course, even though we don't like to have these conversations in polite discourse, system we operate in and the community in which we operate in has a very strong undercurrent of racism, whether we want to admit that or not. So AI will be a part of the future. The question is, will it be responsible, AI will be appropriate, AI will it deliver us the right answers that we can deploy, to make better sense of all the data and delivering better outcomes to communities. And that part's unknown. From my perspective. The question is, what do we need to do to make sure it gets to that outcome. I think in five to 10 years, that's a pretty big ask, because I think we would need to build capacity in indigenous mindset, indigenous data systems, indigenous inputs that would guide how those algorithms function, and we're a long way away from it.

Professor Steve Wesselingh  52:29  
Thanks. Thanks, Alex. My last question, because we're a minute over time. And I'm hopeful there's some young Indigenous researchers watching this. And so Alex, what's your advice to a young Indigenous researcher? Who's sitting out on the path?

Professor Alex Brown  52:45  
Thanks, Steve. Work your ass off. Nobody owes you anything. Right? You've got to earn it. If that means working really hard for a fantastic group. Do it. Just because you're black and deadly and smart, which you clearly are. The world doesn't owe you a living. You've got to go hunt it, work your tail off, and then everything will come your way. So there's lots of other bits along that journey, Steve, but work your ass off is the best advice I can give.

Professor Steve Wesselingh  53:21  
All right, so on that note, I'd like to thank Alex for a fabulous talk and a fabulous contribution over an incredible career to helping us helping Australia but helping your community deal with the inequities that exist and still exist and that we all need to work on improving. Thank you very much, Alex.

End of transcript.