Speaking of Science - 50 Years of Deadly: Aboriginal science, genomic sovereignty and what precision medicine must do for our mob

Australia’s first Indigenous bioinformatician and Wiradjuri man from Central New South Wales, Adam Heterick was our guest speaker for July’s Speaking of Science. Adam works across 2 of Australia's leading Indigenous genomics institutions at Black Ochre Data Labs led out of The Kids Research Institute Australia and at the National Centre for Indigenous Genomics at the Australian National University.

Watch and listen as Adam discusses Aboriginal science, genomic sovereignty and what precision medicine must do for our mob in celebration of NAIDOC Week’s 50 Years of Deadly.

Recorded on Wednesday 8 July 2026 at 10:00AM-11:00AM.

Video transcript

Adam Heterick 0:12
Okay.

Sam Faulkner 0:22
Good morning, everyone. We'll just wait for a few more seconds just to allow everyone to come into the presentation, and we'll be starting very soon. It's 10:01am, so just give it a little bit more time. Everyone's coming in. Just wait for a second or so. 

Sam Faulkner 1:29
Okay, good morning, everybody. Might make a start now. It's 2 minutes past ten and we've got quite a number of people joining us today. Thank you for joining me today for a special instalment of Speaking of Science to recognise NAIDOC Week and its theme this year of 50 Years of Deadly.

Sam Faulkner 1:50
I would like to begin by acknowledging the Traditional Custodians of the lands on which each of us are meeting. I would personally like to acknowledge the Ngunnawal people as the traditional custodians of the land where I am today. I acknowledge and respect their continuing culture and the contributions they make to the life of this nation. I pay my respects to their elder’s past, present and emerging, and I extend this respect to all Aboriginal and Torres Strait Islander people joining us online today. I encourage you to take a moment to reflect on the land on which you stand or sit today, and to recognise and acknowledge the deep connection that Aboriginal or Torres Strait Islander people have with that land.

Sam Faulkner 2:30
My name is Sam Faulkner and I'm the Director of Indigenous Advice under our Research Quality and Advice Branch at NHMRC. Before we get started with today's presentation, I would like to remind everyone that there will be an opportunity to ask questions of our guest speaker towards the end. I encourage you to ask questions, which you can enter at any time in the Q&A function through Teams. This webinar is being recorded. Also, a reminder that if you are ever unable to attend a webinar or would like to go back and re-watch your favourites, all our recordings will be made available afterwards on NHMRC's website.

Sam Faulkner 3:10
As I mentioned, the Speaking of Science event is an acknowledgement of NAIDOC Week, and this year is an extra special milestone as we celebrate 50 Years of Deadly. As you can see, Adam and I have got the distinctive NAIDOC poster backdrop today with the theme and the dates. 

Sam Faulkner 3:31
For 5 decades, NAIDOC Week has been a platform to celebrate the steady, unapologetic and proud voices of Aboriginal and Torres Strait Islander communities. This year's deadly theme is a tribute to the people who built this movement. The elders who stood firm and the organisers who made space. The artists who turned resistance into expression and the communities who show up every year. NAIDOC Week provides an opportunity to reflect on the stories, marches, languages, art and leadership grounded in Aboriginal and Torres Strait Islander history, as well as to continue looking forward by telling our own stories in our own way and on our own terms. This brings me to our guest speaker today, Adam Heterick.

Sam Faulkner 4:16
Adam is a Wiradjuri man from Central New South Wales and Australia's first Indigenous bioinformatician. He holds a Master of Bioinformatics from Edith Cowan University and works across 2 of Australia's leading Indigenous genomics institutions at Black Ochre Data Labs, led out of the Kids Research Institute Australia and at the National Centre for Indigenous Genomics at ANU. Adam's work sits at the intersection of genomics, pharmacogenomics, and Indigenous data sovereignty, focusing on understanding how genetic variation influences drug responses in Indigenous Australian populations.

Sam Faulkner 4:59
Adam serves on both the NHMRC-MRFF Indigenous Advisory Group and Consumer Advisory Group, and also represents First Nations communities, both in Australia and globally. Adam is dedicated to a future where Indigenous Australians are not merely subjects of health research, but sovereign participants and leaders in it and where cutting-edge genomic science is designed by, with, and for communities. Now, if you could join me providing a warm welcome to Adam today as he discusses Aboriginal Science, genomic, sovereignty, and what precision medicine must do for our mob. I'm so excited to hear from you, Adam. Welcome. Thank you.

Adam Heterick 5:40
Thanks, Sam. Yeah, so hi everyone, I'm going to share my screen now. Alright that should be working. Thanks for that warm introduction, Sam. It still sounds weird to be talked about like this, never get used to it. We'll kick off, and yeah, this is going to be a bit of a meandering discussion through Aboriginal Science, genomic sovereignty and precision medicine.

Adam Heterick 6:15
But before we start anything as protocol demands, I will do an acknowledgement. If you’ll humour me for a second, I'm going to try and do it in Wiradjuri because I've been learning. Anyone who knows the correct pronunciations, just yell at me later. I'll just kick off.

Ngayirr walanma yanhanha ngurambang-gu, baladhu ngumbaaydyi-ngirram bulaarr.
"I acknowledge that wherever we are, we are on Country, the lands of First Peoples.”

Ngayirr winhangarra dhuray-gu, ngurambang-gu marambang yindyamarra-ngundi.
"I respect the knowledge of ancestors, and the deep connection to their Country.”

Ngayirr mariyang guwaymarr, ngadyu buraay ngumbaaydyi yindyamarra.
“I pay respects to Elders of the past, those here now, and those yet to come, with yindyamarra (respect, dignity, patience)”

Ngayirr yindyamarra-gu gadhu, bala mayiny-ayinya ngurambang-bulan.
“I show respect to all First Peoples who belong to this land.”[NN1.1]

Adam Heterick 7:01
As Sam was saying, NAIDOC week has been running for 50 years now and that's been 50 years of mob showing up strong, proud and deadly, as it says. The milestone, it does belong to a lot of people. It belongs to the elders, it belongs to the organisers who made space for things to happen, the artists who were out there turning resistance into something we could all see and hear, and the communities that kept showing up year after year after year.

Adam Heterick 7:31
I think we should add in honour of Speaking of Science, I think we should add researchers and scientists in that lineage as well, because doing science on our own terms, it's been an act of resistance as well and self-determination. It's another way that Aboriginal people have been showing up for their community. But the question I kind of want to ask right now is for the next half hour, what does deadly science actually look like? And I guess, not bearing the lead, it's not science that's done to us, it's science that's done by and for us, but we'll get through it.

Adam Heterick 8:12
A little bit about me, and Sam has already waxed lyrical, but I am a Wiradjuri man from Central New South Wales originally, born out passed out the back of Dubbo, and I'm currently living up here in South East Queensland on Yugamba country. I completed my biotechnology degree down at RMIT in Melbourne, and my bioinformatics comes from Edith Cowan over there in the west.

Adam Heterick 8:33
After wandering around this wide brown land, I now work for 2 of those leading Indigenous genomics groups at Black Ochre Data Labs in South Australia and the National Centre for Indigenous Genomics in Canberra. That path has led me to become Australia's first Indigenous bioinformatician, which is weird. Being first isn't really a trophy though, it's a responsibility. It kind of means the door that I came through, it wasn't opened for people like me originally and I guess now part of my job is holding it open and letting people through.

Adam Heterick 9:15
I just want to preface this, that I do speak as a Wiradjuri man, but the science I talk about is for everyone, for all Aboriginal and Torres Strait Islander people, and the broader community as well. The questions we raise here belong to communities all across Australia, and this talk isn't really about me, it's about what it means that people like me exist at all and what we do with it.

Adam Heterick 9:40
Bioinformatics is a weird term. We'll go through it a little bit. I like to describe it as the bastard child of biology and technology. It's how we take the molecules that make up life, like DNA, the different types of RNA, thousands of different proteins, and we turn them through sometimes convoluted means into information we can understand. We do it to learn more about how our bodies are the way they are and why they do the things they do. Like we write computer code to sequence genomes, and we build databases to find patterns in anomalies in health and disease.

Adam Heterick 10:16
But I guess bioinformatics for me isn't really just about the code, because we have to add an indigenous perspective to it. It also becomes about connection, about what makes people, connecting knowledge systems, and between what happened in our past and what will be in the future. For Western genomics, that's called discovering ancestry, but for us mob, it's just Tuesday. Bioinformatics is an essential tool for precision health, because without that culture, without that context, it could become clinical, closed off, just letters and numbers on the screen, like you see there.

Adam Heterick 10:57
What's precision health then? Before I get into what I do specifically, I'll zoom out and look at the big idea that pharmacogenomics sits inside, and that's precision health, right? The promise is kind of simple to say. It's the right care for the right person at the right time. Instead of treating everyone against a one size fits all image of what a person is, you can tailor your prevention, your diagnosis, your treatment to an individual. It draws on more than one thing though - your genomics, your environment, your lifestyle, all of that over your whole life is woven together and that's what it draws upon.

Adam Heterick 11:35
Medicine treats illness once it's here, but precision health is all about
predicting and preventing it as well. It's keeping people well, not just fixing them once they get sick. But the part that matters for Indigenous folk, for our mob, precision health can't just be about the genes. It has to be about country, community. It has to be about those social determinants of health, those environmental determinants of health. It has to be that holistic picture that the Western data model sometimes leaks out. But precision health is only ever as good as the data that it learns from. The question becomes whose data is it looking at? We'll talk a little bit about that, and we'll now look at my corner of it, which is pharmacogenomics.

Adam Heterick 12:19
It's the concept that the same drug at the same dose doesn't work the same way in everybody. I guess a lot of that difference is genetic, so pharmacogenomics is the study of that. It's about how our variation in our genes shapes how we respond to medicines. Things like how fast we break a drug down, whether it works with all, whether it's more likely to harm us, all of that comes about because of a lot of the pharmacogenes that govern those reactions inside our body.

Adam Heterick 12:52
We've probably all heard that the anecdote of a relative or a friend who they take codeine, and they fall asleep straight away because it just knocks them out. Then other people who take codeine and it doesn't work whatsoever. A lot of that is dictated by some of these cytochrome P450 genes that we talk about, so SIP genes, and they are some of the crucial pharmacogenes in the body. A lot of them do internal stuff, but many of them actually metabolise drugs and food and toxins that enter the body, and that's their job. We've co-opted what they were adapted to do over millennia. We've co-opted them to metabolise drugs and medicines, but a lot of the variation is what makes a person a rapid metaboliser versus a non-metaboliser.

Adam Heterick 13:45 
Of course, the rapid and no metabolism can lead to adverse drug effects because maybe the drug works way too quickly and you get a bit sick, or it doesn't work at all so it sits there and builds up in your body and it causes sickness that way. I guess this isn't really a niche academic idea. It's already been built into prescribing guidelines and the clinical decisions that are being made in hospitals. But it does raise a question, whose genes were those guidelines built on?

Adam Heterick 14:12 
Modern genomic medicine runs on big reference databases, so resources like Nomad and the 1000 Genomes Project, they tell us what's normal, what's rare, and what variants are. But the problem is who's in them. These databases really are overwhelmingly built from people of European ancestry. More than 86% of the data in these global references comes from European people. Aboriginal and Torres Strait Islander people are barely represented in there. Less than 1% of the data in these genomic references, I think it's probably actually less than 0.1%, and in a lot of resources are actually absent entirely. The tools that are being increasingly used to guide medicine and precision medicine, those reference points for what genetic variants mean, they weren't built with our communities in mind. They certainly weren't built for us so they can't really tell you what a variant means in a genome that they've never actually seen and so that's not a small thing. That really shapes what happens at the bedside.

Adam Heterick 15:19
That's what my big push is. We need to increase the representation, and we need to get some safe data protocols around collecting that data so that when we're doing pharmacogenomics research, we can tailor treatments better, which is what precision health is all about.

Adam Heterick 15:41
What this means in practice is we start with a prescribing guideline that's been calibrated on a European reference that's good for part of the population. But then when you apply that guideline to our mob, pardon me, the same standard dose, but there's different genetic variation, the guidelines never accounted for that variation. What follows is real harm. We see treatments fail, we see adverse drug reactions, we get side effects that are listed as not being compliant or worsening mental health or all of these things instead of actually pharmacology. This stuff gets quietly dismissed and they're not taking their medication, that's why they're getting sicker when they are taking their medication, it's just not working for them because it wasn't tested on them. I could go on and on and on about clinical trials not being representative of the population, but I won't today. That can be another conversation later. But this is a current clinical issue, and it sounds like it's a historical wrong that we're looking back on, but it's a gap that exists today.

Adam Heterick 17:07
While I say it's not a gap in the data, it is a gap. It's a gap in which a group of people, science in general, has decided to care about. The underrepresentation didn't really happen by accident. It's just the downstream result of decades of decisions about whose bodies were worth studying, whose communities were worth investing in and whose weren't. When we talk about fixing it, it isn't just a technical exercise of filling out a database. It's a question of equity, of justice. But it is fixable and that's what we'll talk a little about a bit more in the rest of the talk.

Adam Heterick 17:48 
If we take a closer look and look at some of the actual numbers about what we're trying to fix. My team and I have done some work on looking at some national adverse drug reaction data from the AIHW. We haven't published this yet. We're working to do that. But essentially, when we've looked through, we've started to see some frightening scales of disparity. There were some drug groups, some age groups where we had as high as 5.5 times the number of adverse drug reactions in Indigenous people compared to non-Indigenous people in the same cohort taking the same drug. 

Adam Heterick 18:35
We had about 3 million adverse drug reactions in our data set and the number looks made up, but it was 84,848. It's like I just typed keys at random, but that's actually the real number. That's the percentage of ADRs that we found in Aboriginal people described in our data set. It was about 2.7%, which looks lower than the population distribution. But when we looked deeper, we found that there were 8 drug groups that had a persistent excess. There were heightened rate ratios between Aboriginal and non-Aboriginal people across those drug combinations as the years went by and we noticed that the people most affected were working age adults. People between 20 and 64, they were having ratios that were 1.5 times to 3.5 times higher than the non-indigenous population of adverse drug reactions, which was a bit frightening. The disparity we noticed was concentrated where monitoring access was not equitable. Rural locations, lower socioeconomic situations. We noticed that in drug groups where pharmacogenomic variation is clinically relevant, where there were a lot of drugs that were covered by those cytochrome P450 genes that I said earlier, that's where we noticed these disparities. We noticed that in groups where multimorbidity and polypharmacy converge, you're taking multiple drugs at the same time, and you're dealing with multiple chronic illnesses at the same time. All of that fits together and unfortunately, it's not actually getting better over the time period.

Adam Heterick 20:21
We were looking at data from way back in 2006 all the way up to the middle of 2023 and we noticed that rates for some of those drug group age combinations were going up. Blood constituent agents, sedatives, hormones, and we noticed that it was getting worse in older adults as well. But there's ways to fix it, and how do we fix it? Well, we can fix it not by extracting. We can do it properly. The answer starts with sovereignty and I'm certain that a lot of you have already heard about Indigenous data sovereignty. It's a simple principle, but there's big implications to it. Aboriginal and Torres Strait Islander people under the UN Declaration of the Rights of Indigenous People, UNDRIP, Aboriginal and Torres Strait Islander people have the right to own, control, access and benefit from data that is about our communities. I guess if you put it simply, it's our data, our control, and our benefit.

Adam Heterick 21:21
In our Indigenous genomics teams, we looked at the principles of Miam Nayri, Wingara and we've looked at the care principles as well. They're international principles. You've probably heard about FAIR. That's data that is findable, accessible, interoperable and reusable. Can we use this data maximally? But CARE sits alongside that, so where FAIR is about the data, CARE is about the people. There's the idea of collective benefit of data. Who has the authority to control the data? You've got to work with it, through the responsibility and ethics. I guess it's a subtle shift. FAIR asks, is the data usable? Whereas CARE asks, is it usable by whom, controlled by whom, and for whose benefit? It sounds abstract but we can make it concrete. In principle it's not something you just put on a poster. It's design decisions that you make in your actual research. You ask at the very start, who decides where the data gets collected in the 1st place? What is the data that is being collected? Who controls access to it? Who can see it? Who can use it? Who can build it? Who benefits when the findings come? Does the value from that data actually come back to the community it was collected from? Or does it only go outwards? Does it only help improve someone's career? Does it only help make an institution more prestigious through its journal publications? Then who governs what happens next?

Adam Heterick 23:01
The authority over the data's future and the data's past. It's not always without friction. Those open data ideals, so the FAIR principles, and the data sovereignty things that sit with care, they do pull against each other, and I guess the instinct to make everything open, it runs straight into the community's rights to govern their own data. The tension isn't something that's going to go away. It's something that we do have to navigate deliberately, and it's not something we can ignore.

Adam Heterick 23:31
I guess the idea is when the compulsion to stick your head in the sand and then just hope it goes away, isn't going to do anything. It's a conversation, it's an ongoing conversation. It's not going to be the same response every single time for every single community. You can't lump everyone together into a homogenous whole. One community might want to share their data more freely than other communities and it's all going to come down to that conversation, but the important thing is you have to have the conversations.

Adam Heterick 24:06
I guess looking at that in practice, I'm going to start with Black Ochre Labs, a team that I work for. We're based at the Kids Research Institute and so we're an Indigenous governed genomics team working to reduce health inequity using the power of genomics. You can see here with data science, multi-omics, integrated genomic healthcare, there's a lot of different sorts of balls in the air and our Professor Alex Brown, he's playing 4D chess while the rest of us are playing checkers, thinking about all this stuff. But yeah, we're doing the work. We're right into it.

Adam Heterick 24:44
We're a multidisciplinary team, we're doing the evidence, we're building the tools as you can see here. A member of our team is building packages, which is our code, one of the coding languages and we're building the governance for genomic medicine that actually serves community. We do research, we do training and capacity building work. We engage with community about what precision health is, what it can do and what it can't do and without efforts like this, precision health will very quickly become privileged health, and the gap will only get bigger.

Adam Heterick 25:25
Then the other team that I work for, the National Centre for Indigenous Genomics, so at ANU, so NCIG generates and manages Indigenous genomic data. They have a collection of genomic data that they've built up and governance that sits behind that. The crucial part is how they do that. It's with community, under community-led governance. Everything is done for community and Indigenous members of the team are there and they lead the work.

Adam Heterick 25:56
I'll just pause for a second and make a comment. I've been asked on occasion by non-Indigenous researchers they've said that doing all this engagement work, letting communities guide the scope, the directions, the outcomes, all of that is a bit of a barrier. It slows science down. “Can't we just be more open and share freely?” Because otherwise, otherwise, I'm not going to get publications done because the community will just say no, and I won't get it published and things like that.

Adam Heterick 26:24
I guess NCIG does all of that, and their outputs are at the tippy top of the field. They produce Nature papers, but they also produce outputs that help community too. All of these videos were done through NCIG, and they'd talk about genomic medicine, precision medicine, precision health. They talk about it in real world language that is accessible for everyone and so you can do both. NCIG is a national resource, and it's all been built on trust, and the trust is the thing that makes the science possible in the first place.

Adam Heterick 27:03
If the framing of that is for a long time, the relationship between research and our communities looked like us being studied, us being consulted at best, the data extracted from us. The work now is starting to look different. We're starting to see communities governing the research, designing it and leading it. Subjects becoming architects. The people that the research was done on in the past are now the leaders of the research and they're deciding where the research goes. That's what deadly science looks like.

Adam Heterick 27:47
Looking forward in the spirit of 50 years, if we get the foundations right now, I guess what the next 5 decades could hold is some of this stuff. But probably some of this stuff is well within reach. It might happen in the next ten years. But we'll see reference data that actually reflects Aboriginal and Torres Strait Islander people. Genomic databases that include our variants, include our genomes, and so that our call can finally be read and categorised properly rather than just being a variant of unknown significance or a variant we've never seen before. Then I guess for my work, pharmacogenomic guidelines that are built on our biology instead of borrowing it from the larger population, the right dose of the right drug calibrated for our communities.

Adam Heterick 28:39
Probably more important than the other 2 things is the next generation will be leading the work. Not contributing to someone else's project, not listed on a grant application, just so that they can tick a box, but actually the leaders of those grant applications and the ones deciding what is done in returning those benefits to their own communities. Back to me being the first Indigenous bioinformatician. The point of that being the first was so that I wasn't the last. I know that what I do in my lifetime probably won't be enough to make a huge change in the world, but hopefully it'll keep the world going long enough for the next generation to come out and save it. They're the kids that aren't even born yet. They're the ones that are at school right now. We need to catch them early, teach them the science, teach them the right ways of doing things, and then hopefully they won't have to deal with our bad habits or the bad habits of the scientists before us.

Adam Heterick 29:38
I don't really want to see this as just aspirational. It's like I'm going to give you all homework. I guess if you're a researcher, you have to build indigenous data sovereignty into your design from day one. It's not an afterthought for your ethics approval. It has to be the architecture that you’re able to work around because if you're doing work for the population, that population is going to include Aboriginal and Torres Strait Islander people. You can't exclude them by default so you really should be thinking about data sovereignty at the start. But I always say that Indigenous data sovereignty isn't like, it's not just for Indigenous people. If you nail it, in terms of your data structure, it's actually helping everyone. I don't know why you wouldn't do it and if you're from an institution, if you're a funding body or anything like that, you'd need to fund and resource Indigenous-led genomics, Indigenous-led science, not just Indigenous included science. You need to look at who's holding the authority about that research and that's not to say that you can't fund a research project about Indigenous people led by a non-Indigenous researcher, if the values are in the right place, etcetera, etcetera. But I think we can move to a point where there's more Indigenous researchers actually leading work and I guess for the NHMRC, I don't want to tell you how to do your job but keep backing the frameworks and the people that make sovereign science possible. That investment is what's helping us turn these principles into practice every day.

Adam Heterick 31:00
I guess acknowledgements for all the members of the teams that I work for. There's a long list of people and I've probably forgotten to list some people as well, but if you see your name there, good. If you don't see your name there, yell at me later. But yeah, I guess my job and our job is to make sure the next 50 years are deadly in the lab and the clinic too. But I need to thank all of these people, and I need to thank the Aboriginal and Torres Strait Islander people and communities who have guided our work and the ones who have come before and paved the way for the deadly science that we're doing now. I think I probably ripped through those, so we've got plenty of time for questions now.

Sam Faulkner 31:58
Awesome. Thank you so much, Adam. I'm just seeing all the applause on the screen as well too. If you have a question, please pop it in the Q&A and I can read that. So just encourage everyone to do that. I'll start off with one for you, Adam just as I'm monitoring the chat as well. Just reflecting on the NAIDOC theme this week, what is the deadliest achievement you've been involved in for Aboriginal and Torres Strait Islander health, whether it's directly or indirectly? I know you might have a lot, but if you could just choose one, that'd be great.

Adam Heterick 32:40
Oh wow, you threw a curve ball at me straight away. The one I wasn't prepared for, Sam. Look, I guess the deadliest achievement, well, they're all deadly, but I think one of the biggest things was the establishment of the NC collection in the first place, like the National Centre for Indigenous Genomics. The community work that was done to establish governments and re-establish connection over some of the samples that were collected from that collection in the bad old days. That community work that was done was like monumental. It took a long time, there was a lot of work, there was a lot of cups of tea, and I wasn't involved in that, but basically that sets us up for being able to do what we do nowadays, and I guess it's an exemplar of how it can be done with legacy collections.

Adam Heterick 33:37
If you open an ultra-low temperature freezer, and you go, “oh, where did all this come from?” you can reestablish those connections and make that work for something good. I think you can learn a lot from NCIG and the team, they're always happy to have a yarn about what they did.

Sam Faulkner 34:03
Thanks. I thought that was a great response. The questions are coming in now and also the congratulations. What a fantastic presentation. Thank you. Just wondering if your results are affecting the outcomes on TGA approvals on new drug use?

Adam Heterick 34:22
No, not yet. We haven't published that yet. We are hoping it gets up at some point in the next 6 months or so. But while we're not changing the way TGA looks at things, we have advocated for and helped with some applications from the RCPA, so that's the Royal College of Pathologists in Australasia. They're the group that decides where the pharmacogenomic testing lies and so we've assisted with some applications to get a few more pharmacogenomic tests Medicare approved. They haven't been put up yet, but hopefully they get added to the schedule later this year. There are currently only 3 pharmacogenomics tests that Medicare covered, but we've pushed forward for 3 more that should have an effect on the whole population, but Indigenous people in particular.

Sam Faulkner 35:28
Thanks, Adam. Sonia, I think we can unmute you and let you ask a question if you're happy to do that. Sonia, are you there? Otherwise, there are a couple of other... Yep, go for it.

Sonya 35:47
Sorry, I actually pressed my hand up instead of clapping before. I do apologise.

Adam Heterick 35:54
Thanks, Sonya.

Sam Faulkner 35:56
No worries. Thank you. Alright, we'll go to another question.

You've got a brilliant one here from Anthony, on the observation of the rate ratio of adverse events. Is your view that the problem is one of dose or of the molecule originally? Or something else, or too hard to say?

Adam Heterick 36:18
It's a good question. It's a good question. I think we're doing a bit of work in the background to start to see whether it is a genetic thing. I guess the problem with the data that we got was it was not super granular. While we could see drug categories, we couldn't see specific drugs. I guess the next port of call is to find some more granular information about which exact drugs were causing the majority of reactions. I guess the data we got gave us a picture and a roadmap. We just need to follow that roadmap now. But given that, I think some of what we were seeing was in drugs where there were a lot of drug groups where drugs whose reactions were dictated by pharmacogenes. We do think that there's a bit of pharmacogenetic variation that is there. It could also be down to dosing issues and as I said, polypharmacy as well. It's a difficult thing to unpick. It's not easy. I mean, if it was easy, we would have done it by now. But yeah, we're working at that.

Sam Faulkner 37:34
Great, thanks, Adam. Did you want to put the homework slide, I believe it was, for researchers, institutions and NHMRC? Because the next question relates to that one. Laura says that you provided some awesome advice for researchers, institutions and NHMRC. Do you have any advice for Human Research Ethics Committees?

Adam Heterick 38:02
Another bloody good one. Reconciling data sovereignty, and open data and data sharing mandates, ethics bodies need to have an idea or on an eye on that. If some of us researchers don't fully understand it completely, the people that make up ethics groups are also in many ways the researchers as well. I think there needs to be maybe a push for these governance bodies and these ethics boards to learn more about data sovereignty and data sharing and how it all works in practice. As I said, the principles are easy to write on paper and easy to put down on a poster or an ethics application or a grant application. But studying examples of how it's actually worked in the real world, and maybe even some cases where it's not worked that well, the idea is that open data asks, is all of this data maximally usable? Whereas CARE asks who decides how it's used? I guess the mistake is treating that the open is the default state and sovereignty is the thing that's going to upset the apple cart.

Sam Faulkner 39:27
But I think if we reframe it to be, that data is as open as possible, but as closed as necessary, I think that's the way to look at it. I think if ethics boards and governance boards start to look at things in that sort of way, we'll start to see more research that actually benefits Indigenous people, but also on the terms of Indigenous people, we'll start to see more of that come to play.

Sam Faulkner 39:55
Super, I'll go straight into our next question.Treatment for predominantly European patients is not all about genomics. Sex matters too. A lot of the clinical trials that have been carried out to calculate dosage have only used predominantly European males and often the doses are not right for predominantly European females or don't work for them. Do you know if there are sex differences and drug effects in Aboriginal and Torres Strait Islander peoples? If so, both genomics and sex need to be considered for treatments to be appropriate for Aboriginal and Torres Strait Islander peoples. Do you have any thoughts, comments on that, Adam?

Adam Heterick 40:38
Yeah, and another really good one. I didn't bring that point up about how the clinical trials are mostly done on a certain age group of white men, but it's true. Even when we were looking at…. So, the TGA does have a readily accessible database of adverse events called the DANE, so the Database of Adverse Event Notifications, and when we were looking at that data initially before we got access to the more detailed data that we had, while there's no Indigenous status flagged, it does list a male-female breakdown. We did see that there was a staggering difference between adverse event notifications, I need to caveat that. The notifications are not necessarily all adverse events. There were a couple of examples on the list of, we'd say spurious adverse event notifications, so they accept everything and I guess they pass through it to see which ones are legit or not. 

Adam Heterick 41:49
But when we looked at the whole of those I think it was, I'm not going to quote numbers off the top of my head, but it was like there were staggering amounts of difference between male and female numbers and so I get it, that bears out with the fact that drugs aren't really tested on female biology because, let's be honest, it can be a bit harder to test because if you're looking for a cohort that is largely stable in terms of hormonal response or anything like that, you're probably looking at men and not disparaging anyone in the room, I'm sorry, but that's the way those clinical trials are set up because that way they can compare Group A and Group B.

But that doesn't mean that we shouldn't do that. We shouldn't focus on genomic differences between males and females. I don't know the difference between indigenous males and females. I don't know if that's been well studied yet, but it's a question for the future and it probably will be something that we will look at down the line, maybe not myself and my team personally, but it's probably a question that can be unpicked.

Sam Faulkner 43:04
I was going to add that perhaps, yeah, it's a potential research grant in the future. Speaking of research grants, we have the next question from Steve, who said, thanks, Adam, great talk. What are the most important things we can do to maintain the community's trust in science?

Adam Heterick 43:07
One of the most important things we can do. There are 3 things that I like to say that are going to maintain trust and build trust. I guess there are 3 pretty simple, again, everything's simple when you say it, but it's hard in practice. The 3 things that I always talk about are you need patience, so like community timelines aren't the same as funding timelines and grant application timelines. And I guess you need to have that patience. You can't turn up to a yarning circle with a stopwatch and say, we've got 60 minutes to get this done, go. You've just got to let that conversation evolve naturally. You've got to let it go where it goes, meander, go off topic several times, come back on topic. It's all valuable. You might not feel that it's valuable, but the story that is being generated there is super valuable for your research. So, you've got to have that patience. You just got to let time happen at the speed time happens. You've got to have humility as well. It's no good, turning up and saying, I'm the expert, listen to me. Your, and again being spurious, your PhD in mid-century Atlantean underwater basket weaving doesn't mean a lot in community.

Adam Heterick 44:50
Like you could be the expert. You could have so many publications to your name, but community have, they've got a PhD in community. You have to listen to listen to the elders and the people in community. Like that, that's what lived and lived experience is all about. We need to get more of more community consumer voices in research, because they're the people who are actually going through the things that we're researching. So why would we not listen to them?

Adam Heterick 45:19
So yeah, patience, humility, and you've got to be honest as well. You need to have a whole bucket of honesty. It's no good turning up and saying, we can do this, we can do that, when you don't know for certain that that's what's going to happen. It's no good saying, yes, we'll come back and tell you about our results. And then as soon as you've got your publication done, they don't hear from you again. You need to be honest, you need to show up, and you need to, yeah, those things that work are what going, are what will build trust and maintain trust, just being an authentic, humble person.

Sam Faulkner 45:56
Thanks, Adam. That's a great reminder for everybody. Our next question starts off with a really fantastic talk. In your opinion, how can governance frameworks be designed so that Indigenous genomic sovereignty is treated as a foundational requirement? Rather, rather than an additional ethical consideration.

Adam Heterick 46:20
Yeah, look. I think, I think there's a lot of bits that go into that, like... Again, it's around that FAIR and CARE attention. There are issues of consent around collection of data and stuff like that as well. Like when we're talking about genomics for a whole community, not just individuals, I guess it stretches all of those things out a little bit more. Individual consent will matter, but community isn't about an individual and genomic data isn't about individuals either. Like your genome also carries information about who you're related to, who came before you, and I guess at some level your community, depending how dispersed your community is.

Adam Heterick 47:12
I guess considering layered governance models where there's individual consent, plus community level consent and the talk of dynamic consent as well. Being able to opt in and out of things. Again, that creates issues around aggregate data sets and the results from one data set may not be applicable if certain people have withdrawn and all that sort of stuff. These conversations are being unpicked and happening right now. But I guess it's just all of those considerations that the individual is not part of the community, but the community can govern things, all that sort of stuff.

Sam Faulkner 47:55
Thanks, Adam. A few more here. Are you using or collaborating on existing data sets, including Indigenous data sets, rather than collecting new data?

Adam Heterick 48:53
The NC collection is one of those legacy data sets, but there are research projects happening that are aiming to collect new data as well. The idea that data is already sitting in collections, I mentioned in the talk as well, there's probably the samples that were taken from Indigenous communities back in the 50s, 30s when people were out tracking around and doing all that sort of stuff, and the consent was non-existent essentially. There's probably lots of samples that are sitting in archival freezers that don't have governance established over them yet.

Adam Heterick 48:08
The idea that using NCIG is that exemplar. It's important that from now anything that we collect has the right governance and the right consents, but we can't go back and uncollected the data that we have already collected. You've got to do the work to bring them back under community governance and then let those communities decide the future of those samples. Have them return to community, have them destroyed and return whatever the community wants to do with those samples is what you have to do. I've said it many times today: the principles are simple but putting them into practice is hard. Communities need to guide this work, and that may take 300 conversations and many cups of tea. But, as I said, you have to be patient.

Sam Faulkner 49:49
That lines up nicely with our next question around community. Thank you for sharing your time and experiences with us all, an incredible presentation. With the push for increasing use of AI, MLM in research, have you seen or experienced a change in the conversation with community around how data is collected, analysed, used and communicated back?

Adam Heterick 50:18
It's a real big issue. It's scary because none of us want to be the person who uploads an Indigenous data set through ChatGPT and then puts it out into the world. It's a real conversation that we are having. I'm not the AI expert, not by any stretch of the imagination and I haven't spoken to community about AI. I've got some colleagues who have, and on one hand it's kind of exciting because we might be able to use these models to see things that we could never see. But on the other hand, we have to be really cautious.

Adam Heterick 51:06
I have been testing some local models on my own computer that don't go out into the wide, crazy internet world. They only learn from what I'm doing on my computer. I think those are the models that we'll be having conversations with community about. They're the ones that we might be able to use to help you with data science, to help extract information from data that is just sitting there. But we have to temper that with the fact that we're never going to use like a Claude or a ChatGPT or something like that for these data sets because there's no way to… it’s like Pandora's box. Once we put it in there, there's no idea. All of a sudden, our sovereign data sets aren't sovereign anymore. There have been changes in the conversations and there's been changes in how we look at things, and I think it's a timely change because we probably should have been thinking about how open these data sets were in the first place. But now we're forced to.

Sam Faulkner 52:18
That's great. A few more questions if you like or we'll see how we go with the next one or 2. But if you've got any suggestions or practical steps on how to develop an Indigenous data sovereignty plan for a new study, and I guess what does that look like in practice?

Adam Heterick 52:23
Yep.

Adam Heterick 52:40
I don't think we've got time to answer that one. That's the next presentation. That's probably send me an email, and we can have a yarn about that. As I said, the principles are some of the things we've already talked about, but…

Sam Faulkner 52:44
Next presentation, maybe.

Adam Heterick 53:00
..I guess sovereignty isn't going to be a handbrake on science. We don't want it to slow things down. That'll be a discussion that we can have. Definitely email me.

Sam Faulkner 53:16
That's great, thank you. Just looking through any recommendations on navigating data sovereignty and sharing genomic data in public scientific databases, which is often required by top tier journals for a publication.

Adam Heterick 53:38
Have I got ideas about that? Can I articulate them very well in a couple of minutes?

Sam Faulkner 53:46
Okay. Maybe an e-mail as a follow-up for that too.

Adam Heterick 53:53
Maybe an email. Reiterating the points that I've talked about before. I think there are ways you can push back on journals requiring open data. A lot of Australian journals, if you're doing research on Aboriginal and Torres Strait Islander people, they require you to have had ethics from an Aboriginal Human Research Ethics Committee. I don't think there's any HREC that's going to say, leave your data open. You can push back on journals and say the people that this data was taken from don't want their data out there into the world. We're not going to publish it. Journals need to understand that too. For too long they've dictated how science operates, I guess. But if we start pushing back and saying no, they'll listen eventually.

Sam Faulkner 55:02
One final question before we wrap up. Deadly presentation, Adam, given that NHMRC is pleasingly implementing questions in certain grant schemes about how the proposed research benefits Aboriginal and or Torres Strait Islander peoples, are you being inundated with requests to collaborate with other research teams? How are you prioritising who to work with? I assume this depends on priorities and preferences from community, but keen to hear your thoughts.

Adam Heterick 55:35
It all comes back to what community want done. I'm actually not being inundated, thankfully. I've got a manageable workload. But I think there is a possibility. There is a real possibility that more and more people realising those questions might start approaching Indigenous experts in various fields. I think speaking for myself, not for everyone, I will have to prioritise, and I'll have to say no gently. I guess that's the idea behind finding more and more people to fill these roles and to build them up because I didn't get here by accident, the room was made for me. I got founded by Alex Brown. I think we need to find more people like that, because you can't be what you can't see and so we need to find the examples in all the sciences.

Adam Heterick 56:50
We need to find the young people, as I said, the ones that are in school right now, the ones that haven't been born, so that they can be the ones that are approached for those grant applications in the future. If the few of us now have to say no a few times, and then some projects have to wait, I guess like we can only do so much. There's only 24 hours in a day and I think we're going to prioritise the ones that the community are fully behind. While we're waiting for those, the next generation to come through and we're developing those people.

Sam Faulkner 57:30
Thanks Adam for that and your patience and thought and care with those questions as well too. We might wrap up now and just add that this concludes our July Speaking of Science webinar in recognition of NAIDOC Week and what a wonderful way of celebrating 50 Years of Deadly.

Adam Heterick 57:48
Yeah.

Sam Faulkner 57:50
I want to thank Adam once again for speaking on such an important topic, and especially during this significant week for all Australians. Thank you to everyone online for attending today. We hope the audio is clear and you were able to hear and see everything from the slides. It is a great pleasure for all of us at the NHMRC to recognise Indigenous led health and medical research and the importance of this in addressing Aboriginal and Torres Strait Islander health outcomes. Thank you for the questions and for creating such an insightful discussion. If there are any other questions that you would like answered, please email our media team and they will get back to you with a response. A reminder that a recording of this webinar will be made available online. Thank you again, everyone, and another special thanks to our speaker, Adam. Enjoy the rest of your day and happy NAIDOC to you all. Thank you.

Adam Heterick 58:45
Thanks, everyone. Hopefully, I didn't put my foot in my mouth too deeply. Alright everyone, stay deadly. Thanks.