Who is Science really for?

INTERVIEWED BY SAI CAMPBELL

An interview with Azure Hermes from the National Centre for Indigenous Genomics.

Woroni sat down with Ms. Azure Hermes from the National Centre for Indigenous Genomics (NCIG) to examine the way science has historically exploited and overlooked vulnerable groups such as Aboriginal and Torres Strait Islander peoples. Science as a field must become cognizant of the uncomfortable reality that its benefits are not distributed equally. There have been many historical harms that have been dealt against Indigenous communities both here in Australia and abroad. Sai will be discussing with Azure the role of the NCIG in ensuring that the Indigenous voice is heard in genomics research here in Australia.

Sai: Thank you for taking the time to sit down with me today. In this issue we are examining the idea of discomfort and it is pretty uncomfortable to realise that science often exploits and overlooks so many groups, particularly when we look at the treatment of Indigenous Australians.

Azure: Thank you - Aboriginal people will say that they feel like the most researched group of people in the world because they feel like there’s constantly people coming in and wanting to do some form of research. And yet when you look at genomics, we’re the most underrepresented population in the world! S: Would you like to tell us a little bit about yourself and what you do?

A: My name is Azure Hermes. I’m a Gimuy Walubara Yidinj woman from Cairns, Queensland. My family are the traditional owners of Cairns. I have two jobs here at NCIG - I’m the Deputy Director, but I’m also the Community Engagement Coordinator.

S: Can you tell us more about NCIG and how it came to be?

A: NCIG has a historical collection of blood samples. We have over 7,000 from 35 different communities across Australia. The collection that we have is actually part of a worldwide study of about 200,000 samples. In the 1990s, the university put a

complete moratorium over the samples because they were not collected via informed consent. A consultative committee of predominant indigenous Australians was then put together which created a list of eight recommendations surrounding this collection’s use. The three main ones were: (1) Create a national centre to look after the samples, which is NCIG. (2) Have an Indigenous majority governance board to be the caretakers of those samples. (3) Actively seek out all 7,000 people not even just to talk about consent, but to talk about what’s next – for example, is it okay for us to keep these samples? If it’s not okay, what should happen to them? Can they be disposed of here in Canberra or do we need to take them back to country for repatriation? My job is to find 7,000 people across Australia and to have that conversation about what to do with these samples. NCIG’s primary goal is to create a repository to use these samples for medical research. Australia has a large focus on closing the gap [between Indigenous and non-Indigenous health outcomes] and in order to do that we need to consider genomics. Another aim is to ensure that community can start dictating the type of research that’s important to them rather than researchers telling them what’s necessary.

S: Could you elaborate a little bit more on what informed consent really means or how that might play out in the field?

A: We don’t just go into [the] community and do a two week stint and give people their $20 food card or fuel voucher or whatever it is, and then disappear with the samples. So, it could take anywhere up to twelve months before we even take one consent. It’s a lot of going in and having a chat, letting people know all the benefits of genomic data and DNA, but also talking to people about the negative things that could come from this. As an example, Indigenous people take the line of our father so if I get a sample and suddenly I find out that my father’s not my father, my whole identity changes. That’s a big deal for indigenous people. There’s also the media and politicians who could use DNA as a way of determining who’s Aboriginal and who’s not, or what percentage makes one Aboriginal and what doesn’t.

S: What have been some of the consequences of not gaining informed consent in the past? A: Back in the nineties there was the Human Genome Diversity project, or the “vampire project”, and the idea was that they were going to be sampling from all over the world. They just forgot to tell Aboriginal people that. They popped into communities thinking that they could just start taking samples and there was [a] huge uproar. The project eventually was scrapped and they didn’t receive any samples from Australia. It really set back Indigenous genomics by 10 years. What’s also interesting about Indigenous communities these days is that they aren’t saying that they don’t want to be a part of research. They understand that being a part of these sorts of studies is beneficial. But what they’re basically saying is that we don’t want you coming in and we don’t want you just taking our sample, our stories[, or] our intellectual property and then disappearing. They go write their papers and then suddenly they’re becoming the subject matter expert about our genome and our story.

S: Why would people give consent in these projects?

A: There’s a whole stack of reasons they would say no. But people will say yes for two reasons: the first is that people really see their sample as their legacy. This is something that they’re able to leave future generations in the hopes that they’ll have a bit of understanding about diseases and medications. And then the other is that people are just sick and tired of going to funerals of loved ones and friends that are dying from preventable illnesses and diseases.

S: Thank you so much for telling us about your work!

A: Thank you. We don’t have any very many Indigenous people that are working [in] this genomic space but we’ve got a lot of great allies. What we’d really like to see now is for Indigenous students who are studying science here at ANU that might already be in their second and third year to reach out to NCIG to see if this is a potential area that they’re interested in and how we might support students to take the lead and to start moving into the space. The more Indigenous people we’ve got in this area, the less scary it is for our mob back in [the] community.