Partnering with First Nations in Northern British Columbia Canada to Reduce Inequity in Access to Genomic Research

Nadine R. Caron (), Wilf Adam, Kate Anderson, Brooke T. Boswell, Meck Chongo, Viktor Deineko, Alexanne Dick, Shannon E. Hall (), Jessica T. Hatcher, Patricia Howard, Megan Hunt, Kevin Linn and Ashling O’Neill
Additional contact information
Nadine R. Caron: UBC Northern Medical Program and Department of Surgery, The University of British Columbia, Vancouver, BC V6T 1Z4, Canada
Wilf Adam: Elder Advisor, Burns Lake, BC V0J 1E0, Canada
Kate Anderson: School of Public Health, University of Queensland, Brisbane, QLD 4067, Australia
Brooke T. Boswell: Community Health Sciences, University of Northern British Columbia (UNBC), Prince George, BC V2N 4Z9, Canada
Meck Chongo: University of Saskatchewan, Saskatoon, SK S7N 5A2, Canada
Viktor Deineko: Northern Biobank at the University Hospital of Northern BC, Northern Health, George, BC V2M 1S2, Canada
Alexanne Dick: First Nations Health Authority Chair in Cancer and Wellness at UBC, UBC Health and Faculty of Medicine, The University of British Columbia, Vancouver, BC V6T 1Z4, Canada
Shannon E. Hall: First Nations Biobank, Department of Surgery, Faculty of Medicine, Vancouver Campus, University of British Columbia, Vancouver, BC V6T 1Z4, Canada
Jessica T. Hatcher: UBC Faculty of Medicine, The University of British Columbia, Vancouver, BC V6T 1Z4, Canada
Patricia Howard: First Nations Health Authority, Northern Region, Prince George, BC V2L 5R8, Canada
Megan Hunt: First Nations Health Authority, Northern Region, Prince George, BC V2L 5R8, Canada
Kevin Linn: First Nations Health Authority Chair in Cancer and Wellness at UBC, UBC Health and Faculty of Medicine, The University of British Columbia, Vancouver, BC V6T 1Z4, Canada
Ashling O’Neill: UBC Northern Medical Program, Faculty of Medicine, University of British Columbia, Vancouver, BC V6T 1Z4, Canada

IJERPH, 2023, vol. 20, issue 10, 1-31

Abstract: Indigenous-led, culturally safe health research and infrastructure are essential to address existing inequities and disparities for Indigenous Peoples globally. Biobanking, genomic research, and self-governance could reduce the existing divide and increase Indigenous participation in health research. While genomic research advances medicine, barriers persist for Indigenous patients to benefit. In northern BC, Canada, the Northern Biobank Initiative (NBI), with guidance from a Northern First Nations Biobank Advisory Committee (NFNBAC), has engaged in consultations with First Nations on biobanking and genomic research. Key informant interviews and focus groups conducted with First Nations leaders, Elders, Knowledge Keepers, and community members established culturally safe ways of biobanking and exploring genomic research. Strong support for a Northern British Columbia First Nations Biobank (NBCFNB) that will promote choice, inclusion, and access to health research opportunities emerged. The acceptance and enthusiasm for the development of this NBCFNB and its governance table highlight the shift towards Indigenous ownership and support of health research and its benefits. With engagement and partnership, community awareness, multigenerational involvement, and support from diverse and experienced healthcare leaders, the NBCFNB will establish this culturally safe, locally driven, and critically important research priority that may serve as an example for diverse Indigenous groups when designing their unique biobanking or genomic research opportunities.

Keywords: Indigenous; First Nations; biobank; genomics; indigenous governance; cultural safety; qualitative; community engagement; trust; partnership; data sovereignty; capacity building; consent (search for similar items in EconPapers)
JEL-codes: I I1 I3 Q Q5 (search for similar items in EconPapers)
Date: 2023
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