This Talk Clinical Trials blog has been written by Tibetha Kemble (Stonechild), who leads Indigenous clinical trial re-Search within the Accelerating Clinical Trials Consortium. Drawing on her work with the Grandmothers’ Council and Indigenous Academic Leads, Tibetha explores what it means to look again at clinical trial research through Indigenous ways of knowing, governance and self-determination. In recognition of the National Day for Truth and Reconciliation, she invites the clinical trials community to reflect on whose knowledge is recognized, who holds authority, and what reconciliation can mean for the future of clinical research.
If you are like me, the phrase “clinical trial research” immediately brings to mind hard sciences, vaccines, and patient partners willing to test a new drug for everyone’s benefit.
You are not wrong. But you are not completely right either.
When I was approached in 2023 about leading Indigenous clinical trial re-Search within the Accelerating Clinical Trials Consortium, the work felt new, both to me and within a field that has largely excluded Indigenous Peoples. Since then, our Grandmothers’ Council and Indigenous Academic Leads have upended much of what I assumed to be true and have reshaped what and how I think about clinical trial re-Search in what is now Canada.
Part of this upending and reframing has come through the language of re-Search. I have taught Indigenous Research Methodologies for several years now, and just when I think I have reached the summit of my own knowledge, someone brilliantly disrupts it. Case in point is my choice to write “re-Search,” that was shaped by Dr. Kathleen Absolon Minogiizhigokwe in her book Kaandossiwin: How We Come to Know Indigenous Re Search Methodologies. Here, Absolon writes:
In relation to Indigenous ways of coming to know, I used re-search, or search… This situates the act of searching again from an Anishinaabe place of knowing versus mainstream methods… To search again is a restoration of Indigenous Peoples’ knowledge systems within colonial structures set out to destroy them. We must restore our knowledge systems ourselves… We look again, over and over.
Kathleen Absolon Minogiizhigokwe, 2022, p.16
Absolon’s invitation connects with another framework that has helped me think about this work more intentionally. In his 2004 article Edmonton Pentimento, Dr. Dwayne Donald borrows a term from painting: pentimento, which describes traces of an earlier image becoming visible through later layers. Donald uses the word as a metaphor to re-read Edmonton’s history and bring the Papaschase Cree into view beneath the dominant colonial account.
Pentimento is useful here because the earlier image was never truly gone; it had been covered by a story that asked us to see something else. In looking again, we are invited to unsettle stories, or what we believe we know to be true, and change what becomes visible.
Indigenous clinical trial re-Search asks us to look again in much the same way. Residential schools not only separated children from their parents; they interrupted the transfer of language, land-based knowledge, medicines, ceremony and the relationships through which those knowledges were carried. Similarly, health and research institutions have disrupted, interfered with, and suppressed our knowledges by treating western knowledge as universal while relegating Indigenous knowledge to belief, culture or anecdote.
Yet our medicines and healing practices did not disappear because the system refused to see them. Our people continued to use them. They observed closely, tested through repeated use, refined their practices and carried the results through collective memory. Over generations, this produced knowledge that was valid, reliable, verifiable and replicable within the systems that created and sustained it.
Viewing Indigenous Peoples as the original clinical trialists does not mean that our knowledge systems are early or informal versions of the randomized controlled trial. They do not need to become western science to be rigorous. The point is that careful observation, testing, verification and refinement did not begin with western medicine. Indigenous Peoples have always been knowledge makers, theorists, scientists and healers.
This changes how we approach Indigenous clinical trial re-Search today. We are not seeking a place beneath the existing hierarchy of academic science, nor are we satisfied with advisory roles that allow institutions to listen while retaining every consequential decision. We are building models governed by our own people and grounded in our own sources and genealogies of knowledge.
That governance begins before a protocol is written. Our Grandmothers’ Council and distinctions-based First Nations, Inuit and Métis Academic Leads help determine the priorities and conditions under which the work proceeds. Communities shape the questions. Indigenous laws and protocols inform the methods, consent, data governance, interpretation and return of benefit. Western clinical trial methods are one source of knowledge in this work. They are not the only source, and they do not sit at the top of the hierarchy.
The resulting trials respond to community-identified priorities. Inuit-led work places country food, identity, language, Elders and community knowledge at the centre of mental health and resilience. Métis-led work examines culturally safe care. First Nations-led work turns the clinical trial lens towards those responsible for delivering care to First Nations Peoples in ways that centre First Nations ways of knowing and being first, and by western science last.
These trials differ because First Nations, Inuit and Métis Peoples are distinct. Their strength comes from their specificity to the people, place, relationships and knowledge system from which each emerges. This is Indigenous sovereignty and self-determination within a field that has historically treated Indigenous Peoples as subjects of inquiry rather than governors of it.
This is where the National Day for Truth and Reconciliation becomes more than the date on which this piece is published. Truth requires the clinical trial community to look again and acknowledge that Indigenous knowledge was not absent. It was painted over by systems invested in the assertion that there was only one objective truth. Reconciliation cannot mean uncovering that knowledge simply so western institutions can use it. It requires the recognition and return of Indigenous authority over how our knowledge is protected, practised and carried forward.
The work we are doing is new. It is opening pathways in contemporary clinical trial research that did not exist before and challenging assumptions about who can lead, what can count as evidence and where scientific authority lives.
But it is also not new at all.
Like pentimento, the earlier image is coming back into view. We are looking again, over and over, and making visible what has always been here. This time, we are not asking to sit within or beneath someone else’s system of knowledge. We are building from our own.
References
Absolon, K. E. (Minogiizhigokwe). (2022). Kaandossiwin: How we come to know: Indigenous re-search methodologies (2nd ed.). Fernwood Publishing.
Donald, D. T. (2009). Forts, curriculum, and Indigenous Métissage: Imagining decolonization of Aboriginal-Canadian relations in educational contexts. First Nations Perspectives, 2(1), 1–24. https://jcacs.journals.yorku.ca/index.php/jcacs/article/view/16868/15674