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Transcript – Community Engagement & Consent – A Conversation with Azure Hermes

by | 2 Dec, 2022 | Collaboratory Podcast, Resources, Transcripts

To ensure accessibility we are committed to providing transcripts of all our podcast episodes, including our short trailer for Season 1 – you can listen to the audio version here.

Episode 9: Community Engagement & Consent – A Conversation with Azure Hermes

[00:00:00] Maya Haviland: Often when we think of co-creation, we think about creating something new from ideas or objects, like creating a playground with design ideas from multiple people and physical materials such as wood and plastic, but are there issues and processes similar? If the co-creation is focused on doing medical research with DNA contained in 40-year-old blood samples, who and what needs to be considered in the decision making about the processes of co-creating knowledge from such human material?

In particular, how can people give informed consent about what gets done with genetic material when potential future uses may be unknown? These are some of the questions we’re gonna explore in this episode of Collaborative Conversations with our guest Azure Hermes who works with the National Center for Indigenous Genomics or NCIG for short in Canberra, Australia.

I spoke with Azure over the internet during a period of lockdown, and so whilst the audio quality of our conversation is a little rough, Azure’s insights into the personal, professional and organisational preparation needed to do effective community engagement, are really fascinating. So, I hope you will stick with us.

[00:01:26] Azure Hermes: My name is Azure Hermes, I’m a Gimuy Walubara Yidinji woman from Cairns, Far North Queensland. Uh, but very fortunate to be sitting on Ngunnawal-Ngambri Land here in Canberra. I am the Deputy Director for the National Centre for Indigenous Genomics. NCIG has a historical collection of blood samples. We have 7,000 samples from 35 different communities across Australia.

Uh, a lot of those samples were collected between the 1960s and the 1990s, but predominant through that 1960s-1970s period. The samples were originally collected by Professor Bob Kirk. So, Professor Bob Kirk, uh, was a ANU researcher and he was doing a research project on population variation. So, looking at how communities are related to each other using, you know, blood samples, so blood typing, blood grouping, that sort of thing.

[00:02:20] Maya Haviland: Professor Kirk collected a huge number of genetic samples from people in Papua New Guinea, Australia, Indonesia, India, and parts of the Pacific, over 200,000 in total. The Australian samples number about 7,000. And in addition to the genetic samples, there’s also a large archive of documents.

[00:02:40] Azure Hermes: We don’t just have blood samples here at ANU, we have a large archive as well. And so that archive contains information like family trees, family histories. It has results. It has correspondence between Bob Kirk and different organizations, so the police, Department of Health, Native Affairs, those sorts of things. So, this is really kind of rich history about what was happening in 1960s and 1970s with these samples.

We don’t know about the consent process but given that the samples were collected in that 1960s-1970s period and the political climate at the time for Indigenous people, you could probably safely assume that informed consent wasn’t given. Bob Kirk collected his samples in a number of different ways. He either collected them himself or he, uh, contacted places like the Department of Health who might have been doing studies in particular communities at the time. So even if people gave consent to the Department of Health for a particular project that was happening at the time, whether they knew their samples would then be given to somebody. For a different research project is highly unlikely. So, we have this historical collection, and we don’t know about the consent. We don’t think it was informed consent. By our standards, today in our ethical world that we live in, that is absolutely wrong. But in the 60’s and 70’s, that’s how things were done could do that. There wasn’t anybody saying, no, no, you can’t do that.

[00:04:12] Maya Haviland: In the years since the samples were first gathered, the technology for doing different forms of genetic research has developed rapidly. And so, this collection of human genetic material has potential research value today that could barely have been imagined when they were first collected. And, as Azure describes, the ethical standards of ensuring clear consent for the use of such material has also changed significantly. By the 1990s, there was a much broader awareness of the challenges of using human samples without consent. So, the ANU put a total moratorium on the use of the collection.

Fast forward another 20 years or so, and around 2010-2011, a researcher with an interest in Aboriginal genetic material, Emma Kowal got in touch with Professor Simon Easteal, who was in charge of the samples at the ANU to see whether the ANU realized that they had this material and what plans there were for their care and potential use into the future.

[00:05:09] Azure Hermes: So between the two of them, they decided that the best approach to deal with these samples was to actually get together a consultative committee. So, this consultative committee was made up of prominent indigenous people from all over Australia. They looked at this collection and they came to the view that historically this was really valuable, and I could understand the importance of why you would want to keep these samples and to create a repository. Which is what we were trying to do.

So, what they did was they gave the university eight recommendations and two ANU’s credit, it accepted all eight recommendations. The three vital ones were that we had to create a national centre to look after these samples, which is how NCIG was formed. We had to have an Indigenous majority governance board to be the caretaker or the custodians of the samples. And the third was that we had to actively seek out all 7,000 people and have a conversation about what to do next. So not necessarily consent, but to talk about NCIG and what we wanted to do to talk about why we wanted to use these samples to talk about the negative things that genomics can tell you to see whether it was actually okay to keep these samples, given that a lot of people would’ve passed away by now. And if we were to keep these samples, who would give permission for that. And if it wasn’t okay, what do we do with them? Can they be disposed of here in Canberra or do they need to be returned to country for ceremonial reburial? So, when I started with the centre in 2015, my role essentially was to find 7,000 people and to have that discussion.

[00:06:51] Maya Haviland: When Azure started her role, she didn’t know much about genomic research, but she turned this into a strength in her task to find a way to explain this complex field of scientific research in ways that were understandable to community members.

[00:07:05] Azure Hermes: I came into this position, I was nervous and probably a bit sceptical because as an Indigenous person from a community, I had seen researchers coming in and out all the time. I was nervous about the prospects of the genomic science and DNA and what that meant for Indigenous people as a whole. So, when I arrived at NCIG, I came with two A4 size pages of questions that I wanted to ask and understand and get more knowledge around.

[00:07:34] Maya Haviland: She presented these pages of questions to NCIG Director Simon Easteal, and together they set about trying to find shared ways to talk about and understand genomic research.

[00:07:45] Azure Hermes: I think that was difficult for Simon as well. I mean, a scientist having to communicate a really complicated scientific terms and jargon to me in plain English. He and I really struggled when we were working through that. And it wasn’t until he said, I’ll just show you and he pulls up his 23andMe profile that he had done on himself. He was explaining genomics and DNA and relatedness and population variation through that visual side of things that I finally understood what he was talking about. And so, what we would do is we would practice how we would tell this story to Indigenous communities. And I would then go home, and I’d explain it to my mum, and I’d practiced with her around the language I was using, and you know, she would ask me questions and sometimes I could answer them and sometimes I couldn’t, and then I would go back to Simon, and we’d practice again.

We kept doing that until I got to the point where I was feeling comfortable about it. When I got to the stage where I felt like I could do this and I could answer questions that people could ask me, and I could explain it in plain English, that non academics, normal people could understand. I decided that I would go home to my community as the first place to talk about these samples.

So, I’m from Yarrabah in Far North Queensland. The collection we had for Yarrabah was collected in 1968. A lot of the samples were from children. So, between the ages of 2 and 15, majority of the people on the list that I have. So, there was about 102 people. Half of the participant list had passed away. Three quarters of the people who had passed away were men. They died all under the age of 40. So that was really straight up confronting seeing my relatives on this list, but then also seeing the statistics of it all. Seeing that 50 of these people had died before their 40th birthday, you know, and three quarters of them were men. That was really hard. I decided to go to Yarrabah because I wanted a safe space where I could have these conversations with large groups of people, and I knew that I could talk to my family and my friends about genomics and genetics and DNA and the NCIG story, and that they would give me really good constructive and sometimes brutal feedback around what I was saying, whether it was the right way to say it, whether I wasn’t being sensitive enough or whether I was being too sensitive, whether I wasn’t showing enough empathy, really gave me some really good, honest feedback about how to do this properly, how to do this in communities, other communities, particularly where I didn’t have family or friends.

I sat down with three of my aunties and I said, I’m working at NCIG, and you know where, where’s got this historical collection of blood samples. And back in 1968, someone came, and they took your blood sample and you know, straight away they were like 1968. I was only five, you know, was someone there with me when my parents there? And I was like, oh, well, you know, I don’t know if Nana was there, we don’t think so. And then of course there’s a bit of anger about that, right? Why are they taking my sample? What was it used for? Why weren’t my parents there? How do you not know what the consent process is like? Wasn’t there a form? Don’t you have that in your records? All of these feelings are valid, right? Like of course you’re gonna feel angry, and of course you’re gonna feel. Quite confronted. And of course, when you start talking about deceased people, it’s like, well, you shouldn’t have these samples, and why when he died, didn’t someone contact us? And why weren’t they disposed of at the time?

And why has it taken so long for someone to come back and tell us, and you know, is this something you should be doing right? Like, you’re our niece? And it was really like, oh my God, like this is really full on. And, but it was all valid and, and I really appreciated that they felt comfortable enough to have that conversation with me to make sure that you really think about what it is you’re doing and whether this is the right thing to be doing.

Once we sort of got through that initial phase of shock and anger and ‘what does this mean’ type conversation, and we started talking about genomics and what it means and what we want to use it for and the benefits of it and the negatives of it, and why we were having these conversations to start with, it shifted into talk about family history and it shifted into talk about, oh, well, “such and such died from this disease” and, you know, and “this person’s got this rare thing”. And I wonder if we took our blood samples, whether it would, you know, be helpful in, in trying to understand these things better. That switch of being angry suddenly turned into I get this. I understand why this is helpful. I understand why this is beneficial, and I understand why you want to do this.

I remember my aunty saying to me that she kind of felt really privileged to be in a position where she could make a decision about her sample. She said, my daughter died from epilepsy, unknown epilepsy, or she said she gave permission for her sample because she doesn’t want people to go through the same thing that she did with losing a child and research takes 30 to 40 years and you may not see any benefit in this at all, but she didn’t care. She said if there is a chance that someone will have a better understanding about a particular disease or a better understanding about medication, it was something she was willing to do.

I realized that if I’m going to do this and I’m going to do this well, and if I’m going to make sure I’m representing Indigenous people, that I needed to treat every single person as if that’s my family sitting in a collection and to make sure that their voices were heard, that their wishes were respected and that their stories were told because it’s not three ml’s of blood sitting in a freezer. It is for researchers who are looking at these samples. But for me and for communities, there’s a real person and a real face behind those samples, and you have to think about that when you’re doing this research.

[00:13:43] Maya Haviland: As Azure was figuring out the process of doing the community engagement mandated by the Indigenous Consultative Committee, NCIG as an organization led by then Director Simon Easteal, was having to build out a suitable governance system.

The aim was to support the care of the collection into the future and develop and implement access protocols that would be informed by the new process of community engagement. This work involved establishment of an Indigenous-led board, as well as moving the collection and NCIG as an organization from being part of the ANU to being a statutory body in its own right, governed by its own legislative requirements. The governance process is a big story of its own, but suffice to say, this work formed the structural backbone to try and make sure that NCIG would be a robust organization whose collection could be a resource rather than a risk for the communities whose samples it contains.

[00:14:39] Azure Hermes: We really thought about what happened 40 years ago, 50 years ago, and we thought about what we would like people to say 50 years from now, and we tried to bring that to NCIG and create something that was Indigenous-led and driven. And if this was going to be a resource that was going to last the test of time, we had to build relationships with participants and communities that would also last that test of time. I hate using this word, but you know, to come on this journey with us to basically be with for the long haul, and not just us as a university or us as a group going in and seeking permission and then disappearing in the community, never knowing again what happened to their samples.

[00:15:23] Maya Haviland: The preparation that Azure put in to figure out how to talk with communities about the collection and its potential value and risks, as well as the work on governance and organisational structures that NCIG did in its early years were really important. But all that doesn’t mean that the process of community engagement could then be fast tracked. Azure has had to carefully prepare to engage with each and every community represented in the 7,000 Australian samples.

[00:15:50] Azure Hermes: It’s months of preparation, if I’m honest, and I’ll give you an example of a community: so Galiwin’ku in East Arnhem Land. I started in 2017, working in that community. I went to the Northern Land Council and sought advice about how to engage with this community. Who were the best people I should be speaking with? The Northern Land Council pointed me to the Shire Council, who has something called a local authority, and the local authority is made up with all 22 family groups on Galiwin’ku. So, there’s a member from each of those families in that group. I went to them, I met with them two or three times talking about NCIG’s work. I wanted to make sure that I, you know, was working with the right communities, pointed me in the direction of Yalu Aboriginal Corporation, which is a research group on Galwin’ku.

So, I made contact with Yalu who were very happy to work with NCIG, which was great. And then I spent about two or three months just training with Yalu. So, what we would do is we would take the participant list that we would have and we would pour over it, and we would see who was alive and who had passed away. And if they had passed away, who was the right person to speak to? And then if they had moved to another community, then we’d have to investigate where they might have moved to. And if they had moved to a community and passed away who the next of kin was for that person, then we would talk about the story we needed to tell.

We looked at the information that we needed to make sure people got when we did our talks and interviews and those sorts of things, because Galwin’ku, English is their third or fourth or fifth language even. So, we had to translate, you know, the information we were trying to get across to people, into two or three or four different languages.

And so, we really wanted to make sure that my research partner and the people that I was working with, was able to translate that story to look at different words. If there wasn’t a younger word for a scientific word that we had. So we had to really think about, you know, the language we use, is it translatable? Did we need to change things around to make it easier to understand? And then I wanted to make sure that the person that I was working with had a chance to ask questions, you know, to go away and think about whether the story was right, because we didn’t want to, get to the participant, and then suddenly there was a bit of confusion about what we were trying to talk about. So we spent a lot of time just getting that right and giving people an opportunity to say, “yes, this is really great, I’m happy with the story” or “no, I’m getting lost here, I don’t understand what this means”. What if they ask me this question? Or how do I answer that? Even though that I would be with them at the time, so that took two or three months in itself.

I didn’t collect my first consent until November 2018. So we did multiple visits with families. And what I’m really proud about and what I love about our community consultation is that there is no timeframe. It takes as long as it takes. And if that means I have to do multiple visits for community so that we can talk and we can ask questions, and we give people space and time to think, then that’s what we do. It’s really interesting because people talk about it being gold standard and all those sorts of things, but for myself, I, it’s not that I don’t see it that way. I just feel like I’m actually just doing what Aboriginal people have been asking for this whole time, right? Which is include us in the decision-making process. Give us time to think about what it is we want. We’ll give you the answers that you need. It’s just gonna take a little bit of time to do that and include us, don’t forget about us. Don’t just take our data and our intellectual property and disappear, you know? Make sure that you are remembering us and you’re coming back to just and inform us of these things.

What I do isn’t rocket science. Everything that I’ve done has been based on going into the community and listening, sitting on my hands, keeping my mouth closed, and just listening to what it is that community organisations and community leaders and community elders are saying. They have their ways of doing business. It’s not their role to fit into the way that you do your business. It’s your responsibility to fit into the way that they do their business. And that’s all I’ve done is that I’ve just kept my mouth shut and I’ve just done what they’ve asked me to do, and it’s worked. There’s no science behind it. There’s no reinventing the wheel or any of those sorts of things. It’s just keeping quiet and letting the community dictate to you how they want this to be done and how they want it to be run and it’ll work. It will work.

[00:20:31] Maya Haviland: Many of us would agree that this long, organic process of community engagement is ideal, but it’s rare that the resources are in place to make it happen.

[00:20:41] Azure Hermes: It’s expensive, no word of a lie. It is really expensive. When we think about our finances at NCIG, we put a large amount of money into community outreach because we know that it’s going to take a lot of time. We know that, you know, sometimes we’re gonna go to community and it’s gonna be shut down for whatever reason. We know that some people will need a lot of time to think about what it is that they want to do. Um, and you take all of that into account. And of course there’s no magical pot of money that never runs out.

We are very conscious of the fact that this does take a lot of time and effort and energy and money. And I suppose what I would say is, is that, when you’re looking at doing research projects in community like this, that you, you need to take into account outreach. And it’s not just money to get you to the community, and to pay for your flights and those sorts of things, but it’s actually resourcing organisations that are helping you do this piece of work. I know that there’s lots of talk in community organisations that I work with who feel really upset with researchers at some time because researchers may come to community and expect organisationsto provide a lot of in-kind services to help them do this particular research. But you are talking about organisationswho are running off the smell of an oily rag, and so to provide in-kind services, there’s a lot to ask of somebody. So you need to be able to properly supply funding to organisations who are helping you pay the correct amount of money to your research partners that are working with you.

You know, expect to pay further use of people’s cars and for stationary and all those sorts of things. So it’s not just about travel. It’s also about providing money to communities to help you do this thing. When you’re writing a grant, you really need to take into account all of those sorts of things. But I also think funding bodies really need to start thinking about the fact that if you are wanting good ethical research in Indigenous communities, you’re gonna have to start providing good resources and good money to be able to do that.

[00:22:39] Maya Haviland: In addition to the time needed to prepare to enter communities and to build relationships. What has Azure found to be useful to support meaningful collaboration between researchers and Indigenous communities?

[00:22:51] Azure Hermes: Well, I probably refer back again to taking advice from the organisations that you are working with. From NCIG’s perspective, we do spend a lot of time in training and making sure that the story that we tell is is right and that it’s translatable and that our research partners are feeling comfortable in that. We try and develop different tools. For instance, we have an animation that we like to show people that has a really great way of explaining historical samples and what we want to do with them and why we’re in the community.

We have some handouts that we like to give people. So, I think in terms of translating, you know the work that we do and take your cues from the community. They’ll tell you where you’re not doing well. So, if the animation isn’t working and, you know, they want more photos or visuals or things like that, then that’s what we do. We go back to the lab, we take photos. You know, we take pictures of what DNA looks like so that we can show people. We talk about the process of what it means to take DNA from a blood sample. So, we take pictures back showing the steps of what that looks like. We take pictures of what the data looks like because people are like, well, what’s data? What do you mean data? What does it look like? You know, how do you use that? We’re trying to take a lot of visual aids back to community in that sense.

In terms of translating back to researchers, I mean that’s fairly easy. I think the problem is getting people to actually listen to what it is you’re saying, and it’s not lip service. You know, like what’s frustrating is when you say, “this is what the community has told me”, and they say, “oh, that’s really great”, and then they do the opposite because actually doesn’t fit into what it is that they’re trying to do

[00:24:28] Maya Haviland: Azure’s reflections on the two-way translation that’s needed between community members and scientists points to the potential challenges in ensuring people adhere to the rigorous ethical processes that NCIG has put in place. How have they done this in practice?

[00:24:44] Azure Hermes: I think it’s time. You know, like if you are working with a group of people who have been doing research in certain ways for a really long time, I get that and I appreciate that. And I know that it’s difficult for someone to just walk in and say, “well, you’re doing it wrong and I want you to change the way you’re doing it and I want you to spend less money on this and more money and community”. Well, I get all of that. I think there are a lot of great people with good hearts that want to do the right thing. They just don’t know how to do it. And I think that there is a willingness to change, to make sure that Aboriginal people are well represented and that they are doing the right thing by community and participants.

You’ve gotta realize that we don’t have a lot of Indigenous people working in this genomic space. That our workforce, and this is quite low, but I think as we start to get more people moving into this space, you know, once you start collaborating with like-minded people and the word starts to spread, I think, you know, we will get to a point where we are getting really great community engagement out of all different work that people are doing. That we’re getting much better-informed consent and that researchers are much better at communicating their findings and playing English back to communities and building relationships rather than it being transactional, right? Like, “I’m gonna take your sample and this is what’s gonna happen and I’m going to give you this some returns”. Rather, building that more trusting relationship that lasts a long time. So maybe the training needs to be two-way. Maybe it’s not just about me going to community and training people about my story, but rather, community coming and training us about theirs and how business is done.

[00:26:18] Maya Haviland: One of the big challenges of working with the NCIG collection is that there was no documented free prior and informed consent for gathering or use of the samples by the people they were taken from. And as discussed earlier, the concept of free prior and informed consent is now a basic pillar of ethical research and indeed ethical collaboration. So cleaning up the relational and ethical mess caused by a lack of prior consent is a big aspect of the community engagement work that Azure has led and a task that requires time and honesty.

[00:26:52] Azure Hermes: My role as community engagement coordinator is really going into community and being honest to begin with, right? I don’t hide behind the fact that these samples were taken without consent. I’m honest about that from the start. I let people know that these samples are in Canberra, I let them know that. It’s highly likely that they did not, or their, you know, loved one did not, or their parents did not provide consent for these samples. I give people the chance to work through what that actually means and how they feel about that.

When we talk about consent, we make sure that we have an interpreter with us so that this story is being told in their language. We talk about why you have a repository, why you do research on DNA and blood samples and saliva samples. What this could bring, what does research mean? How long it takes. Would there be a benefit at the end, what that benefit might look like?

We also talk about the bad stuff, right? And that bad stuff might include things like having someone you thought was your father your whole life, is not your father. And for Aboriginal \ people who take their bloodline from their father, that’s problematic, right? Because suddenly you are thinking your Gimuy Walubara Yidinji when in actual fact you are something completely different. And so that’s something that people need to think about.

We also live in a day and age where we have politicians and popular media personality who are always trying to define indigeneity. Is working with, you know, aboriginal samples, will that contribute to that discussion? Are we going to end up in a system where we’re, you know, looking at percentages, “no, you are only 20% indigenous you are no longer Indigenous, we’re gonna put you in this field”. You know, people think about that and that’s a real possibility. These are negative things that people have to think about when making a decision to be a part of a repository, because their decision doesn’t just affect themselves, it affects their family, it’ll affect their community and potentially it’ll affect, you know, future generations that are coming through. And so, when we talk about free prior and informed consent, it’s really making sure that people can sit up all of those things. That they weigh out the negatives to the good, and if the good still outweighs those negatives and they provide that consent, then that’s fantastic. Just because you give consent at that particular time, it doesn’t mean that you are giving consent for all research. You know, NCIG is trying to put in place that you are giving consent to come into our repository. But if we have particular research projects, we still want you to think about whether that’s the type of research projects you wanna be a part of.

As an example, if somebody comes in and says, “I want to do a study on kidney disease and I want to use samples from these six communities”, we give participants the space to be able to say, “yes, I, you know, I want my samples to be included in this research project”. Or if somebody comes in and says, “I wanna do a research project on why Aboriginal people have brown hair and brown eyes, and not blonde hair and blue eyes”, it gives people the chance to say, “no, this has no benefits to me at all. This is actually, you know, crappy piece of research. I don’t wanna be a part of it. No, you cannot use my sample.” So it’s giving that decision making power back to the communities. So for your prior informed consent doesn’t mean you give consent and then you give consent for everything.

[00:30:13] Maya Haviland: Azure is describing what is called iterative consent, where consent is gained at multiple times during a process for each new step or use. This is of particular importance when the exact or potential use of material is not known, like when samples might be used for different kinds of research or when technology might develop and open up new possibilities.

Iterative consent is a really important principle and to implement it, NCIG has thought about creating an app where participants can be asked to give consent for new uses or research projects. But finding realistic ways to implement iterative consent comes with numerous challenges.

[00:30:53] Azure Hermes: There’s, how do you go back to community or participants to ask them that question, for starters. You’re talking about building, you know, specific infrastructure around that, but then also relying on communities to have proper mobile coverage to access apps like this. You’re requiring communities to have access to laptops or to computers, or to have, you know, someone in community who can actually explain what this piece of research is all about. There’s also the fear of overburdening communities with research, right?

I mean, Aboriginal people are so under-represented when it comes to genomic research. We one of the most under-represented groups out there. But yet, we feel like we’re the most researched population, you know, in the whole world because there’s always somebody there coming to do a research project on something. And so the other problem is actually overburdening people with research projects. We’ve got another one, we’ve got another one, here’s another one. And suddenly you’ve got, you know, six research projects on the go and people actually not knowing what they’re consenting to and what they haven’t consented to. And it’s all just too complicated. And then suddenly you’re getting less interest from people.

It is something that we have to work through. And some of those work arounds might be that when you do consent, you actually have a discussion around different types of research projects at that particular point. So, you say to people, what are you interested in? This is the type of things that we regularly get questions about. So we regularly get asked about diabetes research. We get lots of questions about cardiovascular and staged kidney disease. I mean, are these things that you are interested in and is this something you wanna provide consent to now? Are there things you are not interested in that might include population variation pieces, for instance. So looking at relatedness between Aboriginal people and other countries, is that something that you as a person want to explore? Or is that something that you want your sample to be excluded from completely? And so it’s getting an understanding about what people want and where the line is and where we shouldn’t be crossing. So that is some of the work-arounds.

Other ways of working through that is to do regular visits back to community. So once a year, NCIG goes back to communities to basically say, this is what we’ve been doing for the last year. And these are the different research projects that have come through. Have you changed your mind about still being, wanting to be a part of this project? And if not, that’s okay too. Um, there is little works around, but, but it’s hard. It’s really hard to try and come up with innovative ways to making contact with people and making sure that their story and that their wishes are met. My greatest fear would be in 40 years’ time they say, “geez, I didn’t do this right, and it was bloody unethical, and I can’t believe that they took consent this way”.

And, and you know, there’s this possibility it will because times change, technology changes, and the way that we do things will change. And I pray to the gods that it in 40 years’ time they go “geez, Azure did a really great job, and she tried her best in making sure she got to all the family members. And we can see here that she had lots of conversations with people, and we can clearly see the consent form that my great-grandmother consented to this and I can see that, you know, she had a spokesperson for when she passes away”, and that’s my hope. That’s what I hope happens. But it is something that, yes, I do think about a lot.

[00:34:14] Maya Haviland: We can see that working with Indigenous communities to co-create how historical blood samples may be used is complex and messy. Requiring time, dedication, and a strong commitment to working to ethical values and guidelines. So, what has, Azure learned about the skills practitioners need to work in this way?

[00:34:34] Azure Hermes: I think in terms of skills, I think for community engagement work, you have to have a high level of EQ, like a high level of emotional intelligence, and I think you need to have a high level of common sense and empathy. When I’ve seen researchers go into community, you don’t know everything. Yes, you’re, you’re very book smart and you’re very scientifically smart and you know, you can look at data sets and be able to distinguish between all the different things that you see and that’s incredible.

But in community there’s a different type of knowledge and, uh, I think one of the biggest skills is learning to be able to recognise that you don’t know everything. I think it’s a big skill to be able to sit back and just keep quiet and not feel the need to say anything and to contribute anything and to feel like you are the subject matter expert. Because the reality in community is that you’re not. You don’t know anything actually, when you’re working in community. Having the skills to just be able to sit and listen and learn and not feel the need to speak and to feel a void and to let your ego get in the way is it’s actually really valuable. Giving people space how to think about what it is you want and to build trust is also really important because you actually get a different side to the participant. The more trust you build, the more stories they share, and the more they invite you into their family and into your community.

[00:36:00] Maya Haviland: But with that trust comes the burden of responsibility.

[00:36:03] Azure Hermes: It’s a lot of hard work and you take on a lot of emotional, I guess, emotional baggage from it. When you build trust, people share with you very intimate details about their life and the hardships they face and the sadness that they’ve had to endure. And you know, knowing the trust that people give you, I mean, people trust you with these samples. One of the main reasons people consent is that living on community, there is no trust fund and there is no inheritance, superannuation, those things to leave their children. All they have is their legacy, this sample, which is their legacy, and they’re trusting me as an Indigenous person to do the right thing by that, and it’s not lost on me.

The weight of that responsibility weighs heavily on me, and it’s something that I think about all the time, which is probably why I get really passionate, and really, I suppose upset with researchers when I don’t feel like they’re investing the amount of time that they should be when it comes to research. And why I get upset when people who work on the samples we have, forget about the people behind them. Um, I don’t think that NCIG gets it right all the time, like I, I don’t have an ego about that. I think there are times where I’ve not done well. There are times that I’ve done really well and I’m learning all the time. I’m learning, you know, how to engage with different communities and how to do business in different ways. I’m learning more about myself and, you know, my limits and what I can and can’t do and, and how to be patient and how to, you know, deal with really heavy situations. So I’m learning all the time and, I just, I feel really grateful to be able to be in a position to do that.

[00:37:43] Maya Haviland: As we wrap up this conversation with Azure, what final reflections does she have about the changing nature of co-creative research with Indigenous communities?

[00:37:52] Azure Hermes: Communities are really getting a little bit wiser about research now, and I say that in the sense that Aboriginal people know we have to be a part of research. We know that it’s important for us in the long run, and it’s not that we don’t want to be a part of different research projects, but what we’re saying now is that we’re sick and tired of people coming into communities and then taking blood samples or hair samples or our stories, or essentially our intellectual property, and then coming back to the university and writing your papers and your grants and becoming the subject matter expert about us. And forgetting that, that’s ours to begin with and forgetting about us.

And so, what we are saying now is that if you’re going to include us in research, great. But we wanna be a part of the decision-making process. We don’t want you to forget about us. We want you to come back and tell us about what you’ve been up to and the work that you’ve been doing. And if you don’t have anything to report, then that’s okay too, just come back and say hello. And if you’re gonna write a paper, maybe thinking about acknowledging us as a community or maybe look at putting your research partner that you’ve been working on in the community as an author. Unless you can do those things, some bother coming, you know, because there’s gonna be other researchers behind you that will take your place and that will do all of those things, and that’s who we’re gonna work with.

And so, I think it’s really lovely, right? Like this is self-determination in the making. We’re basically giving that power back, fucking rage against the machine, back to communities to make decisions for themselves. And that’s, that’s all you can do. That’s all you, that’s all we ask really.

[00:39:31] Maya Haviland: Collaboratory is written, edited, and produced by me, Maya Haviland, with production and editorial assistance from Nicole Deen. Audio engineering by Nick McCorriston. Music made especially for us by Seprock, and additional research and production support by Nicole O’Dowd.


Collaboratory is produced on the lands of the Ngunnawal, Ngambri, and Ngunawal people. We pay our respects and ongoing gratitude to the custodians past, present, and future of the lands on which we work and of the knowledges from which we learn. 

Collaboratory is a production of the Scaffolding Cultural Co-Creativity Project hosted by the Centre for Heritage and Museum Studies in the College of Arts and Social Sciences at the Australian National University. Funding is generously provided by the Australian National University Translational Fellowship scheme.