FHS assistant professor leading study to Indigenize health research ethics practices and protocols in BC

by Sharon Mah 

Krista Stelkia, assistant professor at the Faculty of Health Sciences (FHS) at Simon Fraser University (SFU) is leading critical research with a strong collaborative team to improve and advance Indigenous health research ethics practices and protocols in British Columbia to be more culturally safe and grounded in Indigenous knowledge systems and distinctions-based guidelines.

Stelkia and her team will explore the unique perspectives of research ethics partners specifically, Indigenous communities, collectives, and organizations (ICCOs), research ethics boards (REBs), and Indigenous health researchers (IHRs) regarding the gaps, barriers, and experiences in Indigenous health research ethics processes. This Indigenous-led project is challenging the Western-based health research ethics environment today by co-creating wise practices, solutions, and ethics resources as tools to improve and advance Indigenous health research ethics.

“During our pilot study, we found that many BC research ethics boards (REBs) lack the confidence and capacity to review Indigenous health research submissions,” reports Stelkia. Additionally, many ICCOs have their own Nation-based research ethics guidelines, which may not be known by researchers. This diverse landscape is the basis for the project objective to develop distinctions-based guidelines that acknowledges the specific rights, interests, priorities, and concerns of distinct groups in BC.

Given that BC has 203 distinct First Nations and 39 Métis Chartered communities, “a one-size-fits-all approach is just not appropriate,” observes Terri Fleming, a co-principal investigator (PI) alongside Stelkia and director of operations at Health Research BC. “Add to this complex environment the issue of trust, as historical exploitation and unethical practices have led to a mistrust of research in many Indigenous communities.”

The three-year project, “Indigenizing Health Research Ethics in British Columbia with Indigenous Communities, Collectives and Organizations: Co-Create Wise Practices & Distinctions-Based Ethical Protocols in Indigenous Health Research,” was funded by the Canadian Institutes of Health Research (CIHR) and will see Stelkia partnering with many of BC’s leading ICCOs, including First Nations Health Authority (FNHA), BC Association of Aboriginal Friendship Centres (BCAAFC), BC Network Environment for Indigenous Health Research (BC NEIHR), Métis Nation BC (MNBC), and many others.

“We have seen that ICCOs have many capacities and simply require opportunities to bridge those capacities to the research environment,” says Tara Erb, study co-PI, network coordinator for BCNEIR, and FHS PhD student. “However, there continue to be ongoing barriers around institutional structures and processes that fail to respect or acknowledge ICCO leadership and self-determination as well as Indigenous ways of knowing.”

Several of the study’s researchers acknowledge that current REB guidelines and ethics protocols are challenging to enact in the realm of Indigenous health research – existing ethics structures are grounded solely in Western paradigms of science and research, continue to take a pan-Indigenous and extractive approach to consultation, and center research as the property of the investigator rather than as knowledge that is offered to a researcher and/or co-created with Indigenous participants. The current requirement on ethics applications to have a detailed plan written out before engaging with communities can be oppositional to Indigenous values and practices and can perpetuate the harms caused by systemic issues of white supremacy, racism and white privilege.

“When we’re working with First Nations or Métis communities and collectives,” says Dr. Danièle Behn-Smith, co-PI and BC deputy provincial health officer, Indigenous Health, “we are coming from a relational perspective and …from a position of humility, saying ‘these are some of the gifts and resources that we have to offer, and we’d like to offer that and figure out together how that might benefit your community.’ It’s really difficult to hold space for the deliberative process of coming together to co-create what a project might look for.”

Courtney Defriend, co-investigator and director of research and knowledge exchange at FNHA concurs: ”there are policy transformations that we can do [in this project]. There are localized opportunities and policies that we can develop here. There is an opportunity for educating scholars on useful methodology as well as decolonizing our systems by highlighting the contrast in some of those historical pieces of knowledge development and exchange. I would love to see…that we can decolonize some of those ethics that – although seem to prevent harm from a common or Western or traditional research lens – actually can perpetuate harm with our people.”

FNHA is currently developing an ethics review process that aims to increase First Nations self-determination in research, and that “adds a layer on top” of the Tri-Council Policy Statement 2 (TCPS2) reviews conducted by their institutional partners, relays Gillian Corless, study co-investigator and senior advisor on Indigenous health ethics. While this is a step in the right direction, Corless notes that there is still work to be done. “Our ultimate goal is to establish a [FNHA] research ethics board that has regional representation and operates independently. Without a board, we currently are not able to hold and manage our tri-agency grants, which affects up our ability to build capacity, expertise, and self-determination in grant and research ethics management.” Stelkia’s proposal would allow FNHA to advance further in the development of their research infrastructure.

FNHA Acting Chief Medical Officer and co-PI Dr. Nel Wieman is fully supportive of Stelkia’s approach in this project. “Health research utilizing this co-creation approach to ethics and how research is conducted will be very valuable because it will address what First Nations communities WANT to see addressed, in a culturally safe way and free of anti-Indigenous specific racism thereby leading to better health outcomes in the future,” says Wieman. “I believe this is where Stelkia’s ground-breaking research will be most valuable – in disrupting the status quo regarding health research ethics.”

Like many of the project partners, Behn-Smith is full of praise for Stelkia’s framing of the project and its potential ability to advance Indigenous health research to the next level. “[Stelkia] has done such a beautiful job of weaving together this incredibly diverse, really skilled group to be able to come together and bring all kinds of First Nations and Métis wisdom to bear. [She is] finding a way to privilege the laws and protocols of the Nations that make up [what is now] BC, making sure that those are front and foremost.”