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Addressing Disproportionate Impact of Disease on Indigenous Communities Through Culturally Respectful Research Collaboration
SASKATOON — A collaborative effort involving settler researchers from the University of Saskatchewan (USask) and the University of Calgary,
alongside Indigenous researchers from USask, is spearheading a culturally sensitive approach to studying a disease that disproportionately affects Indigenous populations.
Termed Spinal Bulbar Muscular Atrophy, or Kennedy’s Disease, this hereditary condition targets motor neurons extending from the brain stem and spinal cord to muscles in the face,
throat, arms, legs, and lungs. The ailment leads to muscle weakness, cramps, twitching, and impedes speech, swallowing, and breathing.
A recent publication in Neurology Genetics has uncovered striking statistics: in Saskatchewan, those of Indigenous descent experience Kennedy’s Disease at a rate of 14.7 cases per 100,000,
a stark contrast to the average rate of 1 to 2 per 100,000. Notably, 83 percent of study participants from the Prairie provinces self-identify as Indigenous.
Dr. Kerri Schellenberg (MD), an associate professor of neurology at USask, and Dr. Gerald Pfeffer (MD), a neurologist from the University of Calgary,
delved into genetic analysis of affected patients. Their joint efforts unearthed shared genetic markers surrounding the mutation in most patients,
indicating that the heightened prevalence results from a genetic founder effect. The research team estimates this founder lived around 250 years ago.
Remarkably, a considerable number of Kennedy’s Disease cases in this study involve individuals of Cree and Saulteaux heritage. However, not all Indigenous-identifying participants could trace their ancestral roots.
Recognizing the pressing need for inclusivity, Schellenberg and Pfeffer sought guidance from Dr. Alexandra King (MD) and Dr. Malcolm King (PhD),
Indigenous faculty members at USask's College of Medicine, who led the pewaseskwan Indigenous Wellness Research Group. Backed by the pewaseskwan team,
the Kings facilitated a culturally sensitive approach to engage patients and carry out patient-oriented research. A Community Guiding Circle,
composed of those living with Kennedy’s Disease, was established, and meetings were convened to share research findings with participants.
Schellenberg emphasized the importance of this inclusive process, stating, "We made sure that before we presented the information to anybody else,
we had a meeting with the participants of that research study. We presented it and then we sat down and listened."
These collaborative sessions, overseen by a Saulteaux Elder from the pewaseskwan team, encompassed ceremonial openings, introductions, prayers,
and provided participants a platform to voice thoughts on the research, their healthcare requirements, and the prevailing lack of awareness surrounding Kennedy’s Disease.
This holistic approach blends a patient-oriented perspective with the researcher's viewpoint, a synergy Malcolm King considers invaluable.
Pfeffer, engaging primarily with Indigenous individuals in research for the first time, now sees this community-centered and patient-oriented approach as the gold standard for research across populations.
Dr. Alexandra King underscored the importance of providing a platform, be it virtual or in-person, for the patient community to convene and deliberate on the disease's impact and their contribution to further research.
She also conducted one-on-one discussions with patients to grasp their perspectives on Kennedy’s Disease and their evolving needs concerning care, research, and resources.
Supported by a $50,000 grant from the Kennedy’s Disease Association, the research team, comprising Schellenberg, Pfeffer,
and the Kings, is set to expand their investigation to additional locations such as Edmonton, Calgary, Winnipeg, Thunder Bay,
and broaden the Community Guiding Circle to encompass patients from these areas. The Kings and pewaseskwan will continue their support, further exemplifying the collaborative and inclusive nature of this endeavor.
Schellenberg, identifying as a settler on Treaty 6 Territory, expressed gratitude for the meaningful experience of working with the Kennedy’s Disease community.
She shared, "To be able to work with the community and help support physical or medical needs is a way of giving back."
This journey also underscored the significance of the Indigenous approach to research for Schellenberg, revealing how it adds depth to the work by connecting it with people's histories, ancestry, and traditions.
Dr. Alexandra King emphasized the importance of integrating Indigenous engagement right from the outset of research in Saskatchewan,
where approximately 16 percent of the population is Indigenous. However, she also highlighted that it's never too late for researchers to involve Indigenous experts and community members.
Pfeffer recommended that researchers working with Indigenous communities educate themselves about proper research practices and engage with Indigenous health experts and community members. He emphasized,
"In the spirit of reconciliation, it's important those of us who reside on these lands to understand more about the history of Indigenous peoples and to make sure that if we want to help in doing health research, that we do so properly and respectfully."
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