Western traditions have long been prioritized in science, whereas Indigenous experiences, perspectives and ways of knowing have often been tokenized or sidelined.
Dr. Judy Illes, UBC neurology and professor and director of Neuroethics Canada, and Dr. Melissa Perreault, Métis professor in the department of biomedical sciences at the University of Guelph and a translational neuroscientist, are working to reframe that narrative by working with Indigenous researchers globally to advocate for and educate about Indigenous neuroethics.
According to Perreault, their goals are twofold: to ensure research with communities is done ethically, and to demonstrate how Indigenous knowledge can enrich Western approaches to neuroscience. Among Illes’ and Perreault’s co-authored research is a recently published paper that explores ways to integrate Indigenous knowledge with Western approaches in neuroscience — a concept known as Two-Eyed Seeing, introduced by Mi’kmaq Elders Albert and Murdena Marshall.
In the paper, they emphasized the importance of practicing the six Rs when engaging in research with Indigenous communities: respect, relationships, relevance, reciprocity, responsibility and representation.
Rethinking knowledge: Holism vs. reductionism
Western and Indigenous views on brain health both encompass physical, intellectual and emotional components. However, Western approaches are reductionist — studying single components (such as a cell or molecule) in isolation, while Indigenous approaches are holistic, considering cultural, relational and spiritual dimensions of health.
“I don't think we are just a blob of cells. We are cells that [can] comprise the brain and the mind and who we are, as people with agency and identity,” said Illes. “In neuroscience, we have not very much captured those components.”
Thus, mental health research must reflect this complexity, especially when working with Indigenous communities affected by intergenerational trauma, colonization and systemic inequities.
“It's not about fixing the person,” said Perreault. “It's about fixing the system and the inequities that underlie the development of these disorders.” Perreault encourages a strength-based approach to research and acknowledgment of the history that led to the statistics of the variables studied, such as depression and suicide rates.
“Ultimately, the best research is when you can integrate both reductionism and holism into not only what you're doing, but how you're thinking … It took me a very long time to … understand how I can mesh the scientist with the Indigenous person,” she said.
Perreault integrates Indigenous ways of knowing in her approaches to her research with systems biology, a field that studies systems as a whole and connections between all components — such as how brain regions talk to each other and how environment and relationships influence brain function and behaviour.
“It's about both being equal and knowing when the Indigenous knowledge is supposed to come to the forefront and when the approach should be more of a Western approach. You should always keep the big picture in the back of your head,” said Perreault.
Perreault and Illes stress the importance of epistemic and cultural humility: acknowledging the limits of one’s knowledge and practicing openness to different cultures’ ways of knowing. Perreault explained that for Indigenous communities, knowledge systems are rooted in lived experience, generational learning and One Health approaches, which recognize the interconnectedness of human, animal and environmental health.
The need for systemic change
As a first-generation scholar, Perreault recalls feeling isolated in academia due to lack of support.
“There's a lot of pressure that if you're an Indigenous person, you have to do Indigenous stuff all the time, and so I was a little bit isolated… I just wanted to make sure that [Indigenous students] didn't experience what I experienced,” said Perreault.
Perreault is an advocate for “indigenizing” spaces to create environments that encourage Indigenous students to pursue careers in science, like renaming institutions with Indigenous names, including Indigenous art and installing residential school markers and gardens.
“What I call it is passive education … On the one hand, you're making the Indigenous students feel welcome. But on the other hand, non-Indigenous people are seeing this every day … They get used to it.”
She acknowledges that change can be a slow process, but encourages people to make the effort in their own institution. In doing so, she helps to increase Indigenous representation in these spaces, building capacity by empowering more Indigenous students to follow in their footsteps. She also emphasized that there has been a good effort in building capacity in social sciences like geography, but other scientific areas like physics, chemistry and neuroscience haven’t had the same support.
According to Perreault, Western societies contribute to the barrier for Indigenous researchers by hiring Indigenous scholars but limiting them to Indigenous research. Conversely, some Indigenous communities may discourage youth from pursuing scientific careers because their contributions are not seen as immediately benefiting their community.
“[Indigenous people] are always committed to their community. So even though it may not be immediately obvious, I'd say there is a very good chance that whatever they choose to do with their life will benefit the community down the road,” said Perreault.
Reciprocity and relationships
Perreault and Illes emphasize that research with Indigenous communities must be reciprocal, including Indigenous team members and leaders throughout the research process — from conception to dissemination.
This includes co-defining research goals by seeking the communities’ wants and needs. Then, collecting and handling data ethically and ensuring that all data ownership belongs to the community. The findings of the research should be interpreted in a culturally appropriate manner, and the outcomes of the research should return to the research participants and their community in an accessible, meaningful form to ensure accountability and trust-building.
Illes and her team were recognized with an award for building trust with the Tahltan First Nation through their collaborative research on early onset familial Alzheimer’s disease. They collaborated on resources including a children’s book, adult guide and a video tailored to the community’s needs.
“One of the collaborators from the Tahltan community … noted that we were not a group of researchers who just landed like helicopter researchers with a backpack full of consent forms that we threw at people, had them sign, put back in our backpacks and flew away … There was never a rushed moment … That's where trust comes: in truth, in goal and also in pace,” said Illes.
In contrast to the Western perspectives of linear time and hierarchical relationships, Indigenous communities operate on circular understandings of time and lateral relationship networks. This can be directly applied in collaborative research by creating a balance of power, fully respecting all points of view and bringing them equally and equitably to the neuroscience table at every stage of the research process.
“It really comes down to people climbing down off their pedestals and speaking to people, right? It's listening, understanding, having empathy and not just saying, ‘Well, we want to do what's best for you.’ It's saying, ‘I'm going to do what you told me is best for you’, so it becomes less hierarchical,” said Perreault.
Next steps
“People are willing to listen now more than they've ever been willing to listen,” said Perreault.
She and Illes are working on volume eight of Developments in Neuroethics and Bioethics: Cross Cultural Perspectives on Mind and Brain, which expands on the messages of their Two-Eyed Seeing paper: how practicing these principles can transform research ethics, neuroscience and cross-cultural collaboration.
“We have a lot of momentum, so I'm hoping that we can keep moving forward with various initiatives as a group,” said Perreault.
That momentum is global. The team is currently working with Indigenous collaborators from Africa, New Zealand, Australia, South America and individuals who work with the Sámi people of Northern Europe.
The ethical practices that arise from their work with Indigenous communities — respect, pluralism, community engagement and consent — are universally valuable.
“There's no one ‘Indigenous,’” Illes said. “We're talking about communities that are very heterogeneous, that share core values, but each has their own personal community signature ... The approaches we take and what we learn have wide applicability, and that has to be respectfully tuned to the different communities that we work with."
Advice for researchers and students
Moving forward, Illes emphasizes the need for continued recognition of past violations, focusing on building trust going forward, and the use of non-stigmatizing language while avoiding deficit-based language.
Illes and Perreault encourage neuroscientists to go beyond simply meeting the requirements for ethical research, explore broader approaches to research and to actively engage with diverse ways of knowing, “to earn and maintain, rather than self-proclaim ally status.”
When Indigenous ways of knowing are respected and included in science, the benefits ripple outward.
“The broader and more respectful our worldviews of all people,” Illes said, “the better we can build on the strengths of different approaches, and the better our brain health and mental health will be.”
Authenticity also plays a central role for both researchers. To Illes, “it’s believing in what you're doing meaningfully, not just doing it because it's been directed from external sources.”
Perreault adds that “by authenticity, I mean people that understand their role in contributing to the system … and also appreciating that they may have to give something up at some point in order to decolonize the system.”
Perreault encourages students to make the effort to learn about Indigenous peoples — their cultures, histories and lived experiences.
“I think it'll build empathy. And if you can develop empathy for one group of people, then you can develop empathy for other groups of people … I'm speaking about all marginalized communities and all marginalized groups, not just Indigenous people.”
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