 Thank you Aunty Matilda for that very delightful welcome to country. She bought us on irreverent, I think, but it was a very gracious welcome to country. And I acknowledge and celebrate that we meet on the traditional lands of the Nambri-Nanamal people and pay respects to Elders past and present. The Vice-Chancellor, our superstar, Professor Brian Schmidt, and I welcome you to the Australian National University this evening. We are joined by many distinguished academics, students, friends, supporters, alumni, all part of the ANU family. We are Australia's first and only national university and tonight the East Coast has truly met the West Coast because here we have representatives from the National Centre of Indigenous Genomics and representatives from Telethon Kids Institute, a pediatric research institute established about 30 years ago in Perth, Western Australia. And the connections go even deeper because one of our speakers this evening, Professor Alex Brown, is a Professor of Indigenous Genomics at ANU and at Telethon Kids Institute and he happens to be based in Adelaide, so we're covering the continent. And then the wonderful Glenn Pearson is also the Chair of the National Centre for Indigenous Genomics here and is a Senior Executive at Telethon Kids Institute in Strategic Leadership and Indigenous Health. And just to top it off, I'm wearing two hats this evening. I'm the Chancellor of ANU and I'm the Chair of Telethon Kids Institute. So we are less than two degrees of separation. As you know, ANU was established in 1946 in the spirit of post-war optimism as a resource-focused university that would help solve the challenges facing Australia at that time and we had a particular mission to bring credit to Australia, to advance the cause of learning and research and to take our rightful place among the great universities of the world. And over the last 76 years, ANU has met its mission through its people. For our students, our academics are among the best and brightest. They have become public sector and private sector leaders. We have Nobel laureates, prime ministers, business leaders, community leaders, people who are dedicated to changing the life of their times for the better. We've met our mission through our research, world-class research from physics through to philosophy. We have met our mission through our values, our culture, not just what we say, but what we do as an institution. And the exemplar of all of that is the National Centre for Indigenous Genomics. Let me give you a little bit of history. Back in the 1960s, an eminent ANU biologist, Professor Bob Kirk, collected blood samples from Indigenous communities across Australia for the purposes of research. And about 7,000 blood samples were collected. They were used for research to advance the cause of health and medical research for Indigenous populations. They were kept at the John Curtin School of Medical Research, but concerns were raised about the processes, about the way they were collected, issues of consent and the like. And so there was a lull for some years until 2013 when ANU put together a managed collection of the samples and set up the National Centre for Indigenous Genomics, an ethical governance and custodianship for these very precious samples. Under the direction of our Vice-Chancellor, a national consultation process was then undertaken to find the donors of these blood samples, those that were living and the relatives of those who had deceased. And this process was to listen and learn and understand the wishes of those who had donated these blood samples. After a number of years, this very respectful and sensitive and comprehensive consultation has resulted in joint action plans with about four communities. We have many more to go, but about four communities have expressed a wish that those who are living are agreeing to have the samples remain for genomics testing and research. And the relatives of those who have deceased have agreed that the samples can be sequenced, but then cameras are not their home. The samples should be returned home and they will be repatriated. Now, I witnessed this process at first hand because about 20% of the samples were taken from the galley-winkled people of Elko Island near East Arnhem Land. And there was a very detailed and comprehensive consultation so that the samples of those living have remained here and the samples of those who have deceased have been returned home. And there was a traditional burial and burial poles were installed on Elko Island. Brian and I were privileged to attend a replica ceremony that was held here and the two burial poles you see outside in the courtyard are duplicates, replicates of those on Elko Island. And about a dozen galley-winkled people came down for the service. It was sensitive, it was moving, and I've never been more proud of this university to see what we had achieved. Now, we're going to hear a lot more from Alex Brown about this, but I also wanted to share with you that the connection with Elko Island continues because next year we have our first student from Elko Island attending ANU to study an arts degree majoring in politics and Indigenous health and Faith Stevens, and she will be starting here in February. So the connection with Elko Island continues. And this is under our Cambry program, a scholarship program that was set up in 2020 with a $50 million endowment. Then you will give half and then we will raise the other half, and it's to ensure that Indigenous students have an opportunity to study at this great university. And Brian and I have often spoken of our aspiration that this university be an institution of choice for First Nations students, academics and staff. And to that end, I'm delighted that PDU is here because Peter, of course, is our first Vice President of our First Nations Indigenous portfolio here at ANU. Now, to our very special guest, Pat Anderson, who is delivering the inaugural oration tonight for the National Centre of Indigenous Genomics. Now, just to let you in on a secret, Megan Davis was meant to give the oration, but she became ill. So like the trooper she is, Professor Pat Anderson said she would step in and deliver the address on justice, equity and engagement. Now, Pat is well known to most of you in this room. She is an internationally renowned advocate for Indigenous affairs. She has been, well, she is the chair of the Luwitsha Centre and she was the co-chair of the Reconciliation Council, which underpinned the statement, the Uluru Statement of the Heart. So she received an AO in 2014, quite rightly, for her services to Indigenous issues, including health, education and the protection of children. So, Pat, we are so grateful and delighted that you could be here. Please welcome Professor Pat Anderson. Just in case. Well, if you want more water, you can stand up and I'll get in your position. Thank you for that very generous welcome, Julia. You're a much respected politician. You've represented the country very beautifully, I think, overseas. So thank you for that and thank you for the... Well, it's not really for me. I'm only here tonight because of Megan, but I'm actually reading her papers that this isn't mine at all, but I just wanted to make some comments at first about this whole area of genomics. There's a long history to this, which you alluded to, because I'm approaching it not from a scientist's point of view, but from a social justice point of position. In the day, and I'm only talking about in the 1990s, Indigenous people globally have a terrible history with this whole area of science and the taking of blood and samples and what have you. It started, though, with our history looted with pain and hurt about what we call back then the Vampire Project. The taking of our blood for scientific exploration, often without our permission and certainly us not understanding what was actually happening. This was felt globally at the time and across all Indigenous groups. So we used to interact with each other in those days. We used to write letters and use the telephone. We would get warnings from Native Americans say to us, they have been here, watch out, they're coming your way. And this used to circulate at those days around the globe. So be careful that they might come into your community and to your families. However, we have certainly come a long way since then and it's evidence today. Professor Meagan Davis has invited to give this first inaugural aeration and I'm stepping in for her. Now I have to say, back in the day that would never have happened. You would not be inviting Meagan to come and speak here, nor would you be inviting somebody like me to come to any university because when I was growing up and living in Darwin, I'm Aliyara. I'm brought up on Larakia Country. I'm actually a close connection to William. Calcadoons where Aliyara and our countries are but. So it's really close to what we call our poison cousins. And I'm sure you'd explain how all that blood thing works because it is a scientific thing as well. So that's new as well. It's more and more a student coming from a long way away to the university here and I know she'll be welcome. So in the past though, if you'd invited us to come and talk, we would have responded with some insult or other at the time. We just wouldn't do it. When I was chair of the Larakia Institute, genomics appeared on the scene again and we were even then very suspicious of this and closely questioned everyone who was associated with the study. Alex would remember that. And he and two, to cut a very long and distressful story short, in the end we were forced to decide, in the health sector at least, that we perhaps need to come and join in and sit at the table, so to speak. However, it's still very suspicious. Mick Gooda, who was the previous chair to Glenn, had just left the Larakia Institute. He was our CEO at the board and we said to him, Mick, you go on to the ANU Genomics Committee and come back and tell us what they're really up to. So he was a spy. That's a true story, not that long ago, you know. But that's an indication really. There's a few PhDs here actually on this whole kind of area and this suspicion and anger. I think Mick stayed on that committee for some time as the chair and he was able in the end, he was completely sold by it. He was able to correct us and just say, that's really stupid. Anyhow, now though, it's my great pleasure to deliver to you on behalf of our much respected Professor Began Davis, respected across the nation, the National Centre for Indigenous Genomics and inaugural summer aeration. I'm not going to talk any more about the pain because Megan speaks about that much more eloquently than I do. This is Megan. The title of my story this evening is Life Story. And so I want to begin with somebody's very important life story. It was related to me by Azua Hermes, whom we all know as the Deputy Director of this fantastic National Centre for Indigenous Genomics. Azua was responsible for developing our community engagement strategy. She shares the NCIG story in our Indigenous communities and then works with each community to decide what to do next. Can these samples be used or reused? Should we dispose of them respectfully? One day at one of these information sessions she talked with a man from Beagle Bay who had a very young age, had been taken from his family and sent to an entirely new community. Too young to be kept in the dorm trees he was given to another Aboriginal family. He was a member of the stolen generations of survivor. He was upset to have heard that when he was young blood samples had been taken from him and members of his mob, most likely without their genuine consent and now he was being asked to give consent retrospectively. Azua understood how this man felt having grown up in a community not too similar to Beagle Bay and with her own family in this collection she could relate to the uneasiness this person felt. That was globally at the time I have to say. She listened carefully, she listened respectfully, she listened to his story, his hurt and anger and his frustration. And after a lengthy discussion the man turned to her and summed up his view directly. This is him. I have had so much taken from me, my family, my law, alowari, my land, my language, my song, my dance and now you tell me you've taken my blood as well. What else is there left to take? I have to say I admire that man's forthrightness and insight. He was asking exactly the right question. Because of this life story and his questions captured perfectly the crucial moral issue at stake in the work this centre does. The crucial question it all comes down to who owns his life story? I can only answer in two words, he does. The fact that we can use science to tell the story of life is an incredible human achievement. The men and women who began this amazing scientific journey by unlocking the double helical structure of DNA. James Watson, Francis Crick, Rosyn Franklin, Morris Wilkins and others were brilliant scientists. Their discovery laid the basis for today's genomic research with its almost limitless possibilities for medical advances. But I wonder if back then in cold rainy foggy 1950s Cambridge and London it ever occurred to them that one day their discovery could stir up such an emotional response from man from the hot hazy Australian interior like the man was you spoke of. I wonder if they knew they were creating not just the story of life but the life stories of individuals of communities, of mobs. Providing precise numbers to this big personal question, who am I? Where did I come from? What might become of me? For many these questions are incredibly important and sometimes incredibly painful. Finding the answers and therefore someone's life story can be a source of pride and self-confidence and therefore of strength and survival for them. You may recall the great Bob Marley song Buffalo Soldier, it goes if you know your history then you would know where you're coming from then you won't have to ask me who the heck do I think I am. You will find similar sentiment in great Australian songs as well. They're about taking ownership of our story controlling our own DNA takes this a big step further. It allows us to take control of our genetic story and therefore gain control over the building blocks of our own lives. What's our life story? How do we take control of it? It's a central question and first nations survival. And when you possess very little sometimes that life story can be the only thing of value to have to have to hand down to your children grandchildren and community. After all, stripped of our land and its source of wealth what do we have except knowledge of who we are? For someone to come along to potentially take that life story from you draw it away in a vault here in Canberra perhaps then publish in some academic journal maybe make lots of money from it through some medical intervention without properly asking permission and then fail to use its information to benefit you and your mom. Well, it can seem like the last straw. It's not however if it hasn't happened before. Replace genomic researchers and DNA samples with anthropologists and recorded oral testimony. You can see history repeating. Go back slightly further and you can replace them with stolen human remains collected without permission taken to museums sometimes halfway around the world. This moral right of Indigenous people to retain control over our life stories by controlling what is done with their DNA with our DNA in some ways gives ultimate meaning to the slogan nothing about us without us because there's nothing that's more definitively about us than our DNA and the genomic sequence it's arranged into to give us life and make us who we are. If that isn't worth hanging on to what is history has failed to understand this and to get it right. When samples of DNA collected on large scales and communities like Galawinku in East Dunham land in the late 1960s in the midst of a typhoid outbreak consent was supposedly obtained but only in theory. In reality DNA was taken without active or informed consent. The Centre's team have been told that when the DNA sample collectors came to Yarraba in Far North Queensland they would sometimes intercept school children outside the school gate to distract DNA without their parents being told. It's a story with obvious and rather disturbing historical parallels and as a result of such practices people were shocked and upset and initially at least inclined to request their samples for those of their family members to be destroyed. Our job now is to stand this situation on its head make it something positive and give indigenous people around the world back their life stories this way of giving them full consent of their DNA so that the life stories it helps tell them can be a source of strength a source of health and recovery and future careers for their children something that benefits them and in turn something that benefits all Australians and all people of the world by helping advance medical science. The inclusion of the genetic information from First Nations peoples around the world will help fill the gaps in understanding and providing huge benefits that will help us and indeed everyone. In some ways it's a profound and very practical expression of our common humanity another deep symbol of reconciliation and justice. This is the broad moral basis behind the creation of the National Centre for Indigenous Genomics back in 2013 chaired by the Aboriginal and Torres Strait Islander Social Justice Commissioner, Mick Gooda. In practical tasks it's practical tasks is to bring to indigenous communities the health benefits made possible by genomics and precision medicine. These potential health benefits are enormous and the future of science will determine just how enormous they will be. Professor Alex Brown, who will follow me will be able to explain the science but the general picture is clear. Scientists are creating rich libraries of human genetic variation allowing us to gain greater understanding of the human genome and the molecular basis of the disease. It is being used to help treat cancers in prenatal screening and in treating rare diseases. Excuse me. With the creation of the Centre which oversees some 7000 Indigenous genetic samples in the NCIG collection we can ensure Indigenous Australians can also enjoy the benefits of this age of genomic medicine. Currently these genomic database spaces are biased towards people of European ancestry. Indigenous Australians like Indigenous peoples worldwide are not adequately represented. This has to be rectified. If it isn't Aboriginal Indigenous people around the world including here will be excluded from the benefits of modern genomic medicine. And that would further widen the already too far too wide inequalities in health and life expectancy turning tragedy into future into further injustice. With a sufficient knowledge base the scientific power of genomics can be used to better understand and combat diseases that are all too frequent among Australia's First Nations peoples. Diseases are sadly all too familiar with like kidney disease, rheumatic heart disease, diabetes, mental health problems. According to the Australian Institute for Health and Welfare today an Indigenous Australian is almost four times more likely than other Australians to have diabetes or pre-diabetes. And twice as early as chronic kidney disease. And almost one in five Indigenous Australians suffer from it. It's a terrible state especially in the Northern Territories. Above the 26th parallel in fact that's me, not Megan. And the risk increase quite dramatically if you live in a remote community where I might add epidemics and pandemics can also cause extreme damage. Now we already know that many health conditions afflict Indigenous Australians are driven by socio-economic inequality. Diet, unemployment, poor housing, the mental health byproducts of historical and contemporary injustice. And I might add, for me, racism. The answers don't just lie in medical science. But we also know that when those other factors are controlled some Indigenous people are genetically disposed to higher incidences to some chronic diseases. And these diseases are sometimes less responsive to treatments developed for non-Indigenous peoples. That's where some of your work I think in that space. We need to know why. We have a duty to find out the answers why. Genomics can help tell us it is going to take a big scientific effort. This is partly because the genetic variations between First Nations people from across Australia are so wide. Genetically speaking, variations between an Indigenous person from Cape York and another from the Kimberley are as wide as they are between North West Europe and Southeast Asia. We keep telling everyone that we're a collection of nations. And I guess you could say, you say that by showing those these major variations among us, genomic research proves it. To put it bluntly, this goal of including all Australians in the benefits of modern precision medicine are made possible by genomics isn't going to be easy. But it is doable if we try. Success requires providing people with strong reassurances that their genetic material will be overseen by Indigenous people, treated with respect and only ever used with their consent for purposes they also consent to. We've found to date that when we provide these reassurances to people and also explain the health benefits to them and their communities of genomic research, people are willing to participate. Hence, the way the Centre has been structured through legislation with an Indigenous majority on the Board of Governance, which is ultimate oversight of all Indigenous DNA samples and the uses to which it can be put. No Indigenous genetic material can be used without the Board's clear approval. And the Board is able to determine the Centre's research priorities advised naturally by some of Australia's top experts. This is complemented by a world-class community consultation protocol that allows consultation in ways that meet Indigenous community needs and uses Aboriginal ways of decision-making. By doing these things, we have established an unbreakable link between people and their genetic information. By making Indigenous people true partners with the Centre in this way, the basis has been established for success. Like I said, it hasn't been easy to do this, but fewer scientific endeavours in modern-day Australia are worthy of our collective efforts. As we can see by the range of people here this evening, there's a lot of goodwill in this project and for the Centre. NCIG has received broad support with its sizable investment of money and people and priority from the ANU, as well as our nation's most important scientific and medical research agencies. These include the National Health and Medical Research Council, Bioplatforms Australia, the National Computational Infrastructure, the Australian National Data Service, and the Australian Research Data Commons. We are hoping for broad philanthropic support, too, as we grow. As you can see from the list of organisations supporting us, this great cause is backed by some of our most highly trained people from across many areas of science, not just medicine. I want to acknowledge their support, especially the ANU. I'm delighted to see our noble Laurence, Professor Brian Schmidt here, representing his university, when such great people are behind you. You know your cause is a strong one. And more support will be needed to provide the scale that the venture will require. The Centre is already beginning to expand from its initial pilot project. We're in the process of growing from four to 17 people. Perhaps most exciting, we are adding four young Indigenous PhD researchers two in science and other two in the social sciences, as well as setting up a master's programme in Indigenous genomics. That's a long way we've come, isn't it? In doing this, we're not only creating a fantastic career path for young Indigenous people, we're training the next generation to take control not only of the decision around Indigenous genomics, but to understand the science and to apply it. In all these ways, getting First Nations people more control over their lives, tackling chronic disease, creating scientific careers for highly talented young Indigenous people, we are ensuring that Indigenous life stories isn't just a past life story, but a future life story. A story maybe of diseases confronted and beaten, and of life expectancy rising, but it will only happen if we make it happen. And if we listen to Indigenous Australians and work with them to determine how their data is collected, where and how it is stored, and the ends to which it is used. Australia is famous for its medical science. Now we can be recognised for leading the way in making the science and medical applications of genomics work for Indigenous people here and across the world. Australia is in the middle of a historic debate about creating a constitutional voice for First Australians. I'd like to think that we are doing what we are doing here at the National Centre for Indigenous Genomics, a demonstration as demonstrating in a microcosm. Literally, a microcosm, the very real practical benefits that are made possible when you respect people, give them a voice and listen to them. We've shown this approach can work. It's another page in the great life story of our country which we will share. Thank you. So thank you, Pat. That was wonderful. And thank you also for channeling Megan, as you did very well. I also want to thank Aunty Matilda for her irreverent welcome, as she always does. And I did, just to be clear, did not Pat her. I gave her a hug just in case anyone was wondering. So tonight in the conversation, I think we've shown a spotlight on, I think, a history of inequality of how First Nations people across not just Australia but the world have not had an equal go at it within health and medical research. But I think we can see, as indicated, a change. And a change that when I started, I talked very much around respect. The first thing that students hear from me when they come to A&U at commencement, I said, life's complicated rules, but if you start with respect to your fellow human and everything you do, you probably won't get anything wrong. If you just work that one single principle, everything else tends to work itself through respect. It is no wonder that the First Nations people of Australia don't trust medicine and health of blood samples taken without their permission. And there's an old Dutch saying, which is that trust comes in on foot and goes out on horseback. That is, it's very, very difficult to build up trust. It's slow, but by continually demonstrating respect, that is how we'll build up trust. And when we go through and we see the opportunity around health and genomics to empower Indigenous communities to have better health, it has to empower them. It has to be their choice and their agency. And it is a compass on us all in our way of helping bring reconciliation is to be able to work in a trustworthy way so that those benefits can flow, but we cannot expect them to flow without that trust. And so I think meaghan's oration had that theme of respect throughout it. And what I have been, if I can be honest, surprised is how fast trust has come back despite hundreds of years not deserving of trust. And yet in a very short period of time, five to 10 years at this institution, we have seen trust flowing back. It needs to be earned every day. It will never be taken for granted, but it is at the core of everything that we do. And Pat, as you have presented, social justice, equity, empowerment ultimately lies at the heart of harnessing power of genomics in ways that matter to First Nations people. And that trust that I've talked about can help us on all of these fronts. And as Julie talked about, it also provides the trust for people to come and study here for the first time from Alcoa Island. And you can see how everything starts interacting. Julie said is that we are ultimately here to listen. And I think universities need to, in this era, do less talking and more listening. And I always tell my young students that sometimes you can win an argument just by asking questions. And maybe you should think about that because it's actually quite powerful. So tonight we have one final speaker. And I have immense pleasure in introducing the next speaker. But before I do this, I want to thank Professor Graham Mann, who has really stewarded INSIG since his time starting here at John Curtin School of Medical Research. And I should say I literally have done nothing except for to say, let me listen and let me help you tell me what you need and want to do. And I think Graham has done very much the same thing. And so what we're seeing here is what happens when you actually sit back and empower people and let them have the agency to do what they want. And so that's the thing that I'm most proud of. But Graham has in his time at John Curtin School of Medical Research really embraced that philosophy. And I do appreciate that it's a tireless job being the head of John Curtin School of Medical Research. It requires a huge amount of dedication. And I do look forward to your reappointment on the NCIG Board as one of our two ANU represented members. Let's thank Graham. I also want to especially thank Azur. Azur Hermes has become an iconic part of this university since she first arrived. And she, I just cannot describe the level of leadership that she shows here. And she's someone I genuinely look up to. And when I come over and occasionally get a coffee over here, I often see her here and sneak a little conversation and find out what's going on. And so Azur, you have just been a bedrock for NCIG. And so thank you very much as well. And finally, it is my pleasure to introduce Professor Alex Brown, who today was formally announced as the incoming director of the ANU National Center for Indigenous Genomics. This is a big deal. We had no problem believing in Alex, but Alex has believed in us. And together, mainly Alex, he has secured more than $5 million in research funding for Indigenous Genomics. And this is a quantum leap forward. And it certainly shows that the long-term investment that goes back to even the previous vice chancellor in NCIG has been the pathbreaking way that we want it to be. And can I say has had support across the Australian research sector. And so I do thank everyone for playing Team Australian on this. It is a wonderful opportunity for NCIG to have the impactful research that we know it's up. And this is the beginning. And you're going to see that over the next 20 years that you can literally have profound changes across the Australian landscape by what's coming. Alex is an Aboriginal medical doctor and researcher. He grew up south coast of New South Wales and he attained his master's in public health in Israel before returning to Australia to manage the local center for disease control in Alice Springs. In 2007, he set up the research program in Central Australia with Baker Heart and Diabetes Institute with a focus on heart disease and diabetes in Aboriginal people. During this time, Alex commenced and completed his PhD on depression and heart disease in Aboriginal men. Over the last 20 years, Alex has established an extensive and unique research program focused on chronic disease and vulnerable communities with a particular focus on outlining and overcoming health disparities. He's been involved in policy since he commenced as a doctor and he's been heavily involved in engaging government and helping set the agenda in Aboriginal cardiovascular disease management and control and chronic disease policy more broadly. He sits on a range of national committees and co-chairs the Indigenous Research Health Fund. And so tonight, Alex will be speaking about how and why an Indigenous Australian reference genome resource will be the foundation of genomics research, clinical genomics and precision medicine in Indigenous communities. Now INSIG is driving the development of Australia's National Indigenous Genomics Data Resource and as Megan has outlined via Pat, this development is a unique Indigenous governance program that we hope is exportable in all sorts of ways, but it's a great start here because it's so challenging. And it's a unique research model placing First Nations Australians in charge of the genomic data and it's used just as it should be. So we're very proud of that work and colleagues across campus are, you know, thinking about how we can continue to undertake work in all sorts of areas to advance the health and understanding of First Nations people with that respect at the center of everything we do. So join me in welcoming Professor Alex Brown to the stage to tell us about the future. Well, thank you very much for a wonderful introduction, a very kind introduction. I'm very mindful of paying my respects and thanking Aunty Matilda for inviting us all onto country. I'd also like to say that my country is just down the road about an hour away towards the coast and so this is about as close as I get to being on in my space, but I'm very grateful to be here. I'm also very, very honoured and grateful for some elders in the room who have helped guide Aboriginal affairs, Aboriginal medicine, Aboriginal research for the last 30 years. Aunty Pat, it's wonderful to see you here. Tom Karma, Ian Anderson, PDU and many others. People often say that we stand on the shoulders of giants. I've never really been comfortable with the thought of putting my hulking frame on anyone's shoulders. I'd much rather reflect that we're held in the embrace of our elders. In Central Australia, this is called Kanyanampah, to have, to hold, to care the act of embracing and looking after. And I've certainly felt that, so thank you for the reflection of that. Look, what I thought I'd do is take you through really what the aspiration and ambition for the work that we can do together as the National Centre for Indigenous Genomics and the increasingly broad ripple effect of impact we're having on bringing others to that table to make a difference for the future of our children and their children's children. Where did I start in my journey in Aboriginal health research as a very old slide? Anyone who's seen me, give a talk, heard me, give a talk will be sick to death of seeing this slide. I'm sick to death of it. The reality is I'm sick to death of all the sickness and death. This really speaks to the gap in health outcomes for Aboriginal and Torres Strait Islander people. And really, this life expectancy gap, there's new ways of measuring it now. It probably is a poor reflection of the true differentials that exist for our communities. But the life expectancy differential in around 10 years, probably more. And about 80% of that differential is accounted for by chronic diseases, heart disease, diabetes, kidney disease and increasingly cancer. These are the areas of work that I've spent the last 20 years on trying to make sense of and trying to overcome. And where we began our journey in being involved in genomics research was really looking at a community-identified priority for the work. This was really to understand why our communities experienced diabetes at such high rates. You can see some data here on this slide. We see extremely high rates of diabetes in our communities at every age. We see marked inequalities in the development of complications as a result of diabetes and other associated conditions like heart disease. We see here the onset of disease is very early, usually 20 to 30 years earlier than what we see in non-Indigenous Australians. We see a very aggressive phenotype, a very aggressive development of complications from diabetes like kidney disease, like heart disease. And we see these intergenerational cycles of transmission of type 2 diabetes from mother with diabetes to child. And increasingly data is stating to show that these cycles are set up not just from mother to child, but mother to child to grandchild. As a consequence, the feeling was and the conversations we had over three years was that genomics offered us something to explore, to try and explain the patterns of disease and the inequality that we see. Now, what is this story about precision medicine we hear? Well, precision medicine is the application of genomic science to actually make sure we're delivering what is on offer. It involves just like any sort of blood test, but on a more complicated scale, the ability to take samples from patients who may or may not have disease, to make sense of those results and identify a range of markers which may be associated with and can be used to predict or identify that a patient is suffering from that particular condition. The breadth and depth of this data with genomics is on another order of magnitude to a blood test of somebody's hemoglobin, some hemoglobin A1C, but the principle is quite similar. Now, how it's used mostly at this stage is the identification of the right diagnosis for the right patient. Similarly, precision medicine can speak to the identification of the right therapy for a particular phenotype or clinical characteristic or disease that somebody may be suffering, or it can be used to target the right treatment to the right patient. But we think it's got a lot further to go. We're going to make a difference on inequalities. We actually have to make sure that we're developing precision prevention agendas. What's the right prevention for the right patient, given their circumstance, given their clinical scenario, given their environment, given their family, that will prevent the development of disease in the future. By the time they get to my database of heart disease and diabetes, it's too late. How do we prevent it much further up the chain? Similarly, how can we know how people will progress or not progress with their disease over time? How do we hold it steady if we've missed the boat and somebody develops disease? So we think there are applications for precision medicine. We just have to bend it to our will. Now, there's lots of conversations and I introduced you earlier yesterday to the concept of multi-omics. You can just add omics onto the end of a word and you've got a new scientific investigation. The other way to think of it is our ability to look at all of the layers of information housed within the body from the actions of your cells and your genes to tell your body how it functions, what it does, what it looks like, and how it develops or is resistant to disease over time. And we now are building the capabilities to actually look not just at the story of genetics but the story of layers underneath that. The epigenetics, the transcriptomics or the signals sent from your DNA to the rest of your body to how it should function and do its things, the proteins it makes, the metabolites that happen as a response to those proteins. We can look at all of these layers and try to make sense of disease, but we're not there yet. We think there's an opportunity to get there in the next five years. Now you may ask why do Indigenous peoples not really like to talk much about genomics. I think Pat and Megan discuss that very clearly. The truth is in living memory, my ancestors remember having their heads measured because they were somehow subhuman. They weren't really full as part of humanity. There was something fundamentally wrong about us as Indigenous people. In fact, science has not been our friend. It's been used as a cover for the lie that was Terranaliens, but we weren't human enough to worry about the rules and how you should treat people of all types with respect and dignity. So you can forgive Indigenous people for thinking what the hell are you guys up to? And this is reflected in some ways in the involvement of Indigenous people in genomics databases. Well, the real reason the rates of inclusion are so low is because the scientists haven't bothered to ask us so much. But similarly, Indigenous people are wary of being involved in genomics research and Pat touched on some of those realities a little while ago. The truth is we need to do better. We are underrepresented in all of the efforts across the globe in genomics. But the call for ensuring that Indigenous people are involved in all of this isn't just about inclusion in your database. That's not going to deliver equity. We actually have to make sure that Indigenous people are in control of their own destiny in genomics as in any field of science and research and policy and civil society. Genomics is a reflection of how we should treat the rights and aspirations and needs of all peoples, including Indigenous people. We've got a long way to go to make sure that genomics not only is equitable but delivers us equity for our people. And what we've learnt in our work, this is work in South Australia focusing on the genomics of diabetes and complications is what a lot of jobs to do to do this the right way. There's a lot of work spent on consultation. The work that you have to do has to be focused on the priorities identified by communities. It has to be controlled by Indigenous people and their interests from the very start. You have to adhere to a range of cultural protocols, many of which are different in every community you're working in. Fundamentally, you have to be accountable. Somebody has to take responsibility, not just when things go well, but especially when things go poorly and they will. We have to be focused on the benefit that the work that we do delivers. It has to be tangible. It has to be meaningful. And do you know what? Benefit has to be defined by the community you work with, not your own esoteric interests as a researcher who can come up with 10,000 ways to write a grant, to tell everyone how wonderful you are and how awesome your science is. It's not enough. Communities define what benefit means. You know what? You should just ask them. You'd be surprised. Similarly, we have obligations of guardianship, of custodianship, and making sure that every gift given to us in a research context is treated with respect it deserves and our lessons are shared and that favour richened. And we're obsessed about doing this for DNA. And what we found out was every story, every narrative, every survey, every dot point on a piece of paper that you feel in as part of research is a gift that should be treated with respect and dignity it is given with. We should give thanks. Everything matters. It's not just the DNA. And we have to rethink what we think we offer Indigenous people in terms of genomics. If we're going to deliver equity in genomics, not just in equity in access, but equity in outcomes, we have to turn our heads upside down and think about what Indigenous people offers us in terms of the conduct and our interpretation of genomics. Indigenous people have a lot to offer. Surviving for 65,000 years in this continent and not dying is a pretty good effort. Not only is that, you'd have to have a pretty good sense of what it takes to maintain small populations across generation after generation after generation through change, through adversity, and through even in the later years, the significant impacts of colonisation. And what is the conversation we need to be having about why we should be doing genomics in Indigenous communities? Well, there's lots of reasons we can come up with Indigenous communities want to talk about, but sometimes they're a little different. Communities want to use the power of genomics to tell their story, where they came from, what their stories already say, what's been held in law or trooper for 60,000 years, unchanging, unbending, known and transmitted and danced and sung across generation after generation. They want to build the terms of engagement on their terms. This is fundamental to building trust. They want to be able to utilise genomics to get a clear answer, particularly for their kids who are struggling with a diagnosis when they may be suffering from rare diseases. But we can also use it to better predict disease, to better identify the risk of people having trouble in the future so we can stop it in its tracks. We'll have to be able to build a workforce. This is a benefit in and of itself. And not just the workforce that knows what genomics is, a workforce of Indigenous people that leads the future, according to our aspirations for genomics into the future. We need to build the right data systems. We need to build equitable policy. It should improve access to better healthcare delivery, but ultimately our KPI is improving health outcomes and reducing inequality. That's an enormous task ahead, and one that we've all agreed should be our shining guiding principle. So what have we built? We've built a team in Adelaide to support the efforts here of the National Centre for Indigenous Genomics in partnership to focus not just on genome biology, but to build a national ecosystem for driving benefit and change from genomics directly according to the needs of Indigenous Australians. Developing a system, focusing on understanding complex diseases like heart disease, like diabetes, and like cancer, and working on large-scale cohorts that we've established over the last seven or eight years to truly get to the heart of why our communities experience inequalities like no one else in this nation. We have a particular interest in precision health. How do we actually take genomics to make a difference to the delivery and targeting of healthcare to Aboriginal and Torres Strait Islander people across this country, and significant interest in healthy people and healthy place across time, and how genomics can be utilized to understand our place in our symbiotic relationship with country across time. As part of this national consortia, we've brought together a lot of people who want to work together, not just with us as partners, but with Indigenous communities the country over. Based across all states and jurisdictions, we've been able to bring together a coalition of people truly committed to making a difference. Our focused work will be on telling the story of Indigenous people with the assistance of genomics. What is our story? Where have we come from? What does that mean? Clearly, to be able to do this, we have to invest in the development of various data sciences. We have an opportunity to understand genetic variation led by the National Centre for Indigenous Genomics here around what makes us special and unique, but beyond what we already know, it makes us special and unique. Our interest in complex disease, our willingness to build capacity, and the importance of collaboration across research, but also health systems and community architectures. National Centre for Indigenous Genomics, as has already been touched on, has a strict guiding set of principles about caring for a very unique collection, collected some time ago, but has the opportunity, according to communities and individuals, to be used for good in the future on their terms as they define. We can develop best possible practice in this area as an opportunity to learn and teach and engage with others from right across the globe. We've got a role to care for this collection, to engage deeply with communities and ensure that Indigenous people control the agenda from top to bottom. This is a demonstration of the work that Azira and her team have to go through. It's monumental. You cannot really get to understand how much time goes into working with communities to even get to a point where a single sample could be sequenced. Many years, many conversations, lots of yarns, lots of tears, lots of drama, lots of accountability, lots of cups of tea. Thanks Azira. There's an opportunity here, work led out of the National Centre for Indigenous Genomics to utilise advanced technological approaches to genome sequencing to develop reference genomes which will be the template against which we can make sense of the genomic investigation of disease that we need to do with our communities across time. It may be that one reference genome won't work, I'll leave that to the smart bioinformaticians to tell me as we develop that over time. As was touched on, from a genomics perspective, work led here from the National Centre for Indigenous Genomics has already identified how unique and rare we are. 22% of the variants seen in the initial scan of genomes from the Indigenous samples held within NCIG are unique to this continent and Indigenous people seeing nowhere else in the globe that we know of. But even within that, there is variation across communities. We talk about heterogeneity all the time, we are different. That uniqueness across communities is going to be as important and powerful as knowing that we're different and similar to other populations around the globe. This will be the unique contribution that genomics can make from Indigenous peoples consent to unlock our understanding of disease and health more broadly. Our Indigenous Genomics agenda has been supported through the MRFF, the Medical Research Future Fund to set up this national network. Its idea is to build Indigenous leadership and empowerment in genomics the country-wide. Not just in doing stuff, but guiding stuff and engaging with communities so that they are the authors of their own destiny to advance scientific approaches to health and disease. We will build it. We will enhance communities' ownership and control of the work that we do. We will identify and communicate key matters of policy in genomics for our communities. We will develop and model best practice, build the workforce of the future of Indigenous people leading their own charge in genomics. And we will develop a very clear pathway of benefit defined by communities about how genomics can be used for them. How this looks is a whole raft of national nodes around the country. Queensland, New South Wales, Victoria here in the ACT through National Centre for Indigenous Genomics here at ANU and Rare Disease flagship led by Gareth Bainham and colleagues in WA. South Australia will provide a coordination node basically because everyone deep down wants people to tell them what to do. Well, we'll just do that. Because you know this. Clearly our role is to focus on Indigenous governance, policy of matters that matters, the data systems that are required and capability development. And hopefully each of these flagships will focus on key user cases of genomics that should deliver benefits to our communities if done the right way. We need to define what's required to deliver that benefit and who sets the agenda about what really matters. Where are we heading? We think the next five years will be an extremely important extension of the foundations that NCIC has already laid out for us. We think we can set out a national genomics ecosystem. We think within that timeframe we need to integrate and make sense of complex multi-omics in the work that we're doing in South Australia. And we have a particular interest in understanding or at least getting strong signals about how disease has developed over time in human populations. Beyond that we need to understand and respond and collect information that represents the diversity of Aboriginal and Torres Strait Islander people across this country to use this as a base for a precision medicine platform so we can deploy it at scale and make a difference in people's lives. And we want to know what it's going to take to deploy genomics and all of its pieces into Aboriginal and Torres Strait Islander primary care so that delivery of benefit is direct. We ask the question what does equity in genomics look like because that's fundamentally what our agenda is here. We have to have the right principles. We have to invest in the right foundations. We need to make sure that we're not just doing genomics that Aboriginal and Torres Strait Islander people have access to but the will of genomics is bent to reducing inequality particularly from a health perspective. And we need to make sure that we deploy and implement what we learn at scale and evaluate its impact on the health and wellbeing of our communities. That is our agenda moving forward. So why do we need to do anything specific in Indigenous communities in genomics where unique we are. Our knowledge is sacred, it's contextual it's deeply rooted in country and so is our DNA and it needs to be managed and cared for and controlled by Indigenous peoples and their interests in the first instance. Science has failed us and we need to redress that imbalance. We know as Indigenous people what our responsibilities are for generations to come. Fundamentally if not done well genomics can serve to widen the inequalities we already see so our agenda has to be about delivering meaningful benefit to communities as defined by them. This is our story moving forward we can't do it alone we'd love to have your help we look forward to working with you into the future. Thank you. Russell Gruen I'm the Dean of the College of Health and Medicine and that has been a true privilege to have that oration thank you very much Alex and thank you Aunty Pat for your oration too. I think it's one of the most amazing things about this institution is the ability to be surrounded by people who are leaders in the science leaders of the community leaders in humanity and I'd pay tribute to Alex, to Pat and to the other Indigenous leaders here in the room who have been really paving the way and make this a very special organisation and an organisation I'm really proud to be part of and feel very privileged to be able to stand amongst you and to learn from you and to continue to learn from you going forward. I'd really like to have a little bit of time for some questions and answers so do you want Aunty Pat to come forward? Aunty Pat would you be able to come back to this chair? Alex got to say that was terrific thank you I'm sure there are lots of interesting questions but please feel free to ask Aunty Pat or Professor Alex Brown a question. I'm going to start Aunty Pat we've talked about the importance of Aboriginal and Torres Strait Islander people being involved in the research and enterprise itself what can we learn as non-Indigenous people about that process and how can we foster good practices in organisations that we're working in? I don't want to sound trite but I think this university is making a real effort these are hard lessons learned, they don't come easy and we are quite difficult to deal with and rightly so so the things that you're doing here I think it's one of the better universities in terms of encouraging I always feel comfortable here I've never been a student here but I've come here on many occasions and I always feel comfortable here and that's a measure for me that it's doing okay it doesn't sound very scientific but that's how it is and it's very difficult to deal with us lessons are hard learned but we're getting there and I remember Ian Anderson when he was a student and Alex I remember when you first started out so we have come a long way but it's hard but I think that's the best I can do it does sound a bit trite because I'm here but nevertheless I think some of the history of the medical profession confronting us has been a difficult one I grew up in Darwin and my mother was a stolen generation and the superintendent of native welfare of Carl and Compound was in fact a doctor and doctors featured throughout history having those sorts of controlling authority kinds of figures so it's been a long hard road to come to him we're sitting here beside people like Alex and Ian in particular so it's been a long like everything in this country is hard everything's hard maybe something to do with the landscape itself it's a very difficult landscape it's a hard country to live in and I think it makes for tough people with fairly tough ideas we've had to be tough to survive despite everything that's done to us we can all sit here like we are this evening so many people here people who I respect and admire Josie Douglas from Alice Springs from all over Australia actually here tonight and just as an aside when I was growing up coming to a place like this was not possible we weren't welcome in fact at universities when I was growing up in Darwin the only job that was available to me was to be a cleaner I'm not suggesting that but it was the only option so that was the future for me to be a cleaner and everybody before me and after us we used to clean at the hospital once again coming into contact with the medical profession but also labour forced labour for the public service the families in fact it was public policy of the day and it was my mother to read and write that's in one generation so tough country eh we've got an opportunity though we have an opportunity to change all it's just changing but with the coming referendum I'll ask that you all try to inform yourself make an informed decision read about it so as you were able for those of us over 18 once in a lifetime opportunity so I'm going to be quiet now in Brussels Thank you very much for both of the presentations they were just sort of challenging and inspirational in turn I guess a couple of themes that really struck me Pat when you were speaking to sort of the communication across continents warning of interventions of scientists and now the need to sort of galvanise efforts and activities across different First Nations communities internationally in the area of genomics so I'd be interested in reflections on that point what's happening internationally in collaborative efforts in First Nations genomics and I guess the other theme was that beautiful timeline of Azure's engagement with community and the pace we know that genomics is taking and the challenge then to ensure that Indigenous principles and consultation and activity is considered in that global context the global alliance for genomics of health etc how do we ensure that activities that are already underway heed the message of First Nations genomics That's your responsibility that's what you have to do I was looking at Alex actually you know all the scientists in the room that's your responsibility not mine I'm like going off the stage you're just walking onto it so hopefully through our experience and the experiences that you've had you will be much more mindful and more aware and alert to things that are wrong and you'll decide what's wrong and what's right OK that's the shortest Q&A that we're going to have forever because we have one more question Janine hold on one more question I was just going thank you both for really beautiful presentations the Alex can you expand on the contextual because I think it's a really important point Thank you for that that wasn't a Dorothy Dix either by the way I mentioned to you Julie add ohm or ohmix onto word becomes a new scientific paradigm Gareth has asked me about the contextual ohm what this refers to is really the work that people like Ray Lovett in the room, Lisa Wop in the room would understand about getting a better handle on the context in which the genomics operates the environment the psychosocial stresses the behaviours and measuring that accurately so that when a bunch of scientists sitting in a dark room with a whole bunch of high performance computing spit out some genomic signals they can make sense of it because we've done the work as indigenous people to define what we what matters most to us in terms of understanding exposure, stress colonisation, racism environmental characteristics that will influence how our body functions and that we can make sense of what the results are from science with who we are as indigenous peoples first that's what I mean by the contextual ohm that's the work that we have to do as a nation so that we can compare the data in the future and know that it tells the story of indigenous peoples in the first instance from our voices Terrific, thank you I'm sure Aunty Patton, Professor Brown would be happy to answer more questions afterwards for example, seeing the yep, okay to eugenine Mahon from the Thank you Russell and look it's come to that part of the evening where it's only two minutes and me standing between you and some networking getting up and moving and importantly some food so could I please start by acknowledging that we are on the lands of the Ngunnawa and Nagambi people and also pay my respects to and love to elders past present and of course future emerging generations so good evening everyone my name is Janine Muhammad I'm a proud Ngunnawa woman from South Australia little place called Point Pierce Mission and I'm honoured to have been appointed only one week ago so I wasn't expecting this gig tonight the Deputy Chair of NSIG I'm also the CEO of the Lowetshire Institute which is Australia's only national Aboriginal community controlled health research institute so I'm doubly honoured to be able to close tonight's proceedings and to thank our Aunty Pat Anderson for an amazing speech tonight delivered on behalf of Professor Meagan Davis can I have a round of applause as most of you would know and I think you've heard it tonight Aunty Pat was the chair of the Lowetshire Institute for nearly 20 years and now continues to guide our work as our co-patron that 20-year journey in health and research has involved work that reflects many of the issues that Meagan has powerfully raised about genomics as has been said the Lowetshire Institute was founded by community leaders because our peoples had largely been locked out of the research process non-indigenous people did research on and about us not by us and for us so this is groundbreaking work tonight Meagan too has said that there's transformation ahead and this comes through the work of NSIC Meagan spelt out clearly our people have previously felt that they've not been able to do the work that needs to be done but indigenous lead and strengths based as NSIC is has seen a huge and important shift today in our board meeting we were quite clear and touched on the topic that we know that we will only ever travel at the speed of trust so I thank Pat and Meagan very much for the powerful words here tonight and of course Professor Alex Brown for his leadership, his vision and his wisdom and the talented William Barton for another amazing performance and my many thanks on behalf of the NSIC Board also goes to Professor Russell Grohan for that short but insightful Q&A and of course to the honourable Julie Bishop and Professor Brian Smith and of course tonight would not be possible without our amazing NSIC team and the events team here tonight can we have a round of applause that my friends marks the end of the formal proceedings for this summer oration I wish everyone on behalf of the board happy holidays, safe travels home tonight and we look forward to working with you all next year and on a personal night I look forward to a positive outcome also being led by the work of Pat Anderson and Meagan with the referendum that is pending and a formal voice for our peoples in Australia's Constitution now an ending I invite you to join the board members and teams for some drinks in the foyer good evening everyone