This toolkit is for community members, health care providers or researchers who are working in the area of genetics/genomics in academic, policy, community, or practice-based settings. The toolkit aims to assist interested parties in understanding optimal research practices and how to ensure the safety of Indigenous people engaged in research. We also hope to assist emerging researchers as they consider best practices for conducting genetic/genomic research in partnership with Indigenous Peoples.
This page is constantly evolving to reflect new and emerging information. As we learn from experiences, communities, Elders, and knowledge keepers, we strive to work together and share our perspectives.
Principles, Guidelines and Policies
- Tri-Council Policy Statement 2: Ethical Conduct for Research Involving Humans (TCPS2) - Chapter 9, 2018
- Jordan’s Principle, 2016
- Truth and Reconciliation Commission of Canada: Calls to Action, 2015
- CIHR Guidelines for Health Research Involving Aboriginal People, 2007-2010
- United Nations Declaration on the Rights of Indigenous Peoples (UNDRIP), 2007
- DNA on Loan: Issues to Consider When Carrying Out Genetic Research With Aboriginal Families and Communities, 2006
- Ownership, Control, Access, and Possession (OCAP®) Principles, 1998
- CARE Principles for Indigenous Data Governance (Intl, 2020)
- Holding Space: A Toolkit for Tribal-Academic Partnerships (US, 2018)
- Te Mata Ira — Faces of the Gene: Developing a Cultural Foundation for Biobanking and Genomic Research Involving Māori (NZ, 2016)
- 'Walk Softly and Listen Carefully': Building Research Relationships with Tribal Communities (US, 2012)
- Guidelines for Ethical Research in Australian Indigenous Studies (AU, 2012)
- Establishing a Maori Ethical Framework for Genetic Research with Maori (NZ, 2011)
Summer Internship for Indigenous Peoples in Genomics (SING)
Indigenous Cultural Safety Resources for Health Care Providers and Researchers
Provincial Health Services Authority of British Columbia (PHSA):
PHSA Indigenous Health Program and Southwest Ontario Aboriginal Health Access Centre:
Canadian Institutes of Health Research (CIHR):
Ownership, Control, Access, Possession (OCAP®) Training by First Nations Information Governance Centre (FNIGC):
- Fundamentals of OCAP®’ Training course
- Video: Understanding the First Nations Principles of OCAP™: Our Road Map to Information Governance
First Nations Health Authority Resources:
- Video: Bringing Cultural Safety and Humility to Medical Practice, Mr. Joe Gallagher, 14 September 2018
- Video: 'You don't belong here': Integrating Indigenous 'cultural humility' into health care, Dr. Shannon McDonald on CBC Radio-The Current, 04 April 2018
Tools, Approaches and Policy Development
Indigenous genomic databases: pragmatic considerations and cultural contexts. Caron NR, Chongo M, Hudson M, Arbour L, Wasserman WW, Robertson S, Correard S, Wilcox P. Front. Public Health, 24 April 2020 doi: 10.3389/fpubh.2020.00111
Rights, interests and expectations: Indigenous perspectives on unrestricted access to genomic data. Hudson M, Garrison NA, Sterling R, Caron NR, Fox K, Yracheta J, Anderson J, Wilcox P, Arbour L, Brown A, Taualii M, Kukutai T, Haring R, Te Aika B, Baynam GS, Dearden PK, Chagné D, Malhi RS, Garba I, Tiffin N, Bolnick D, Stott M, Rolleston AK, Ballantyne LL, Lovett R, David-Chavez D, Martinez A, Sporle A, Walter M, Reading J, Carroll SR. Nat Rev Genet. 2020 Apr 6. doi: 10.1038/s41576-020-0228-x. Review. PMID: 32251390
Genetic Counselling Guide v.3, 2021. McIntosh, S and Jacob, K (Silent Genomes Project team). An Indigenous cultural safety framework for genetic counsellors engaging with Indigenous research participants.
Mapping a route to Indigenous engagement in cancer genomic research. Henare KL, Parker KE, Wihongi H, Blenkiron C, Jansen R, Reid P, Findlay MP, Lawrence B, Hudson M, Print CG.Lancet Oncol. 2019 Jun;20(6):e327-e335. doi: 10.1016/S1470-2045(19)30307-9.PMID: 31162106 Review.
An integrative review of the barriers to Indigenous Peoples participation in biobanking and genomic research. Aramoana J, Koea J; CommNETS Collaboration.J Glob Oncol. 2019 Mar;5:1-9. doi: 10.1200/JGO.18.00156.PMID: 30844324
Genomic research through an Indigenous lens: Understanding the expectations. Garrison NA, Hudson M, Ballantyne LL, Garba I, Martinez A, Taualii M, Arbour L, Caron NR, Rainie SC. Annu Rev Genomics Hum Genet. 2019 Aug 31;20:495-517. doi: 10.1146/annurev-genom-083118-015434. PMID: 30892943
Facing up to injustice in genome science. Guglielmi G. Nature. 2019 Apr;568(7752):290-293. doi: 10.1038/d41586-019-01166-x. PMID: 30992587
Genomic medicine must reduce, not compound, health inequities: the case for hauora-enhancing genomic resources for New Zealand. Robertson SP, Hindmarsh JH, Berry S, Cameron VA, Cox MP, Dewes O, Doughty RN, Gray G, Jacobsen JC, Laurence A, Matisoo-Smith E, Morton S, Shelling AN, Sika-Paotonu D, Rolleston A, Skinner JR, Snell RG, Sporle A, Print C, Merriman TR, Hudson M, Wilcox P. N Z Med J. 2018 Aug 17;131(1480):81-89. PMID: 30116069
Engaging Māori in biobanking and genomic research: a model for biobanks to guide culturally informed governance, operational, and community engagement activities. Beaton A, Hudson M, Milne M, Port RV, Russell K, Smith B, Toki V, Uerata L, Wilcox P, Bartholomew K, Wihongi H. Genet Med. 2017 Mar;19(3):345-351. doi: 10.1038/gim.2016.111. PMID: 27632687
A Comparative Analysis of Indigenous Research Guidelines to Inform Genomic Research in Indigenous Communities. Taniguchi NK, Taualii M, Maddock J. The International Indigenous Policy Journal Vol. 3 Issue 1 Article 6, March 2012
2010 Presidential Address: Culture: The silent language geneticists must learn— Genetic research with Indigenous populations. Roderick R. McInnes Am J Hum Genet. 2011 Mar 11; 88(3): 254–261. doi: 10.1016/j.ajhg.2011.02.014 PMCID: PMC3059421
Bridging the divide between genomic science and Indigenous Peoples. Jacobs B, Roffenbender J, Collmann J, Cherry K, Bitsói LL, Bassett K, Evans CH Jr. J Law Med Ethics. 2010 Fall;38(3):684-96. doi: 10.1111/j.1748-720X.2010.00521.x.
DNA on loan: Issues to consider when carrying out genetic research with aboriginal families and communities. Arbour L, Cook D. Community Genet. 2006;9(3):153-60. Review. PMID: 16741344
Necessary voices. Editorial. Nat Genet. 2020 Feb;52(2):135. doi: 10.1038/s41588-020-0585-6. Editorial. PMID: 32025002
A framework for enhancing ethical genomic research with Indigenous communities. Claw KG, Anderson MZ, Begay RL, Tsosie KS, Fox K, Garrison NA; Summer internship for INdigenous peoples in Genomics (SING) Consortium. Nat Commun. 2018 Jul 27;9(1):2957. doi: 10.1038/s41467-018-05188-3. Review. PMID:30054469
Bringing Indigenous researchers to the forefront of Genomics. Claw, K. G., & Garrison, N. A. (2017). Webpage
Genetics/Genomics Research with Indigenous Populations
Barriers and Considerations for Diagnosing Rare Diseases in Indigenous Populations. D'Angelo CS, Hermes A, McMaster CR, Prichep E, Richer É, van der Westhuizen FH, Repetto GM, Mengchun G, Malherbe H, Reichardt JKV, Arbour L, Hudson M, du Plessis K, Haendel M, Wilcox P, Lynch SA, Rind S, Easteal S, Estivill X, Thomas Y, Baynam G. Front Pediatr. 2020 Dec 14;8:579924. doi: 10.3389/fped.2020.579924. PMID: 33381478; PMCID: PMC7767925.
An Alaska Native community's views on genetic research, testing, and return of results: Results from a public deliberation. Hiratsuka VY, Beans JA, Blanchard JW, Reedy J, Blacksher E, Lund JR, Spicer PG. PLoS One. 2020 Mar 16;15(3):e0229540. doi: 10.1371/journal.pone.0229540. PMID:32176704
Indigenous Peoples and genomics: Starting a conversation. Morgan J, Coe RR, Lesueur R, Kenny R, Price R, Makela N, Birch PH. J Genet Couns. 2019 Apr;28(2):407-418. doi: 10.1002/jgc4.1073. PMID:30629780
Primary biliary cholangitis in British Columbia First Nations: Clinical features and discovery of novel genetic susceptibility loci. Asuri S, McIntosh S, Taylor V, Rokeby A, Kelly J, Shumansky K, Field LL, Yoshida EM, Arbour L.Liver Int. 2018 May;38(5):940-948. doi: 10.1111/liv.13686. Epub 2018 Jan 23.PMID: 29297981
KCNQ1 p.L353L affects splicing and modifies the phenotype in a founder population with long QT syndrome type 1. Kapplinger JD, Erickson A, Asuri S, Tester DJ, McIntosh S, Kerr CR, Morrison J, Tang A, Sanatani S, Arbour L, Ackerman MJ.J Med Genet. 2017 Jun;54(6):390-398. doi: 10.1136/jmedgenet-2016-104153. Epub 2017 Mar 6.PMID: 28264985
Homozygous mutation in PRUNE1 in an Oji-Cree male with a complex neurological phenotype. Costain G, Shugar A, Krishnan P, Mahmutoglu S, Laughlin S, Kannu P.Am J Med Genet A. 2017 Mar;173(3):740-743. doi: 10.1002/ajmg.a.38066. Supplemental material: Parents’ experiences: the journey of WES testing. PMID: 28211990
Body fragmentation: Native American community members’ views on specimen disposition in biomedical/genetics research. Sahota PC. AJOB Empirical Bioethics, 5:3, 19-30, DOI: 10.1080/23294515.2014.896833
Native Hawaiian views on biobanking. Tauali i M, Davis EL, Braun KL, Tsark JU, Brown N, Hudson M, Burke W. J Cancer Educ. 2014 Sep;29(3):570-6. doi: 10.1007/s13187-014-0638-6. Erratum in: J Cancer Educ. 2020 Feb;35(1):210. PMID: 24683042
Alaska native people's perceptions, understandings, and expectations for research involving biological specimens. Hiratsuka VY, Brown JK, Hoeft TJ, Dillard DA. Int J Circumpolar Health. 2012 May 22;71:18642. doi: 10.3402/ijch.v71i0.18642. PMID: 22663942
A KCNQ1 V205M missense mutation causes a high rate of long QT syndrome in a First Nations community of northern British Columbia: a community-based approach to understanding the impact. Arbour L, Rezazadeh S, Eldstrom J, Weget-Simms G, Rupps R, Dyer Z, Tibbits G, Accili E, Casey B, Kmetic A, Sanatani S, Fedida D.Genet Med. 2008 Jul;10(7):545-50. doi: 10.1097/gim.0b013e31817c6b19.PMID: 18580685
Long QT syndrome. Jackson H, Huisman LA, Sanatani S, Arbour LT.CMAJ. 2011 Aug 9;183(11):1272-5. doi: 10.1503/cmaj.100138. Epub 2011 Apr 11.PMID: 21482651
Genetic counseling for early-onset familial Alzheimer disease in large Aboriginal kindred from a remote community in British Columbia: Unique challenges and possible solutions. Butler R, Dwosh E, Beattie BL, Guimond C, Lombera S, Brief E, Illes J, Sadovnick AD.J Genet Couns. 2011 Apr;20(2):136-42. doi: 10.1007/s10897-010-9334-9. Epub 2010 Oct 7.PMID: 20927575
Cultural enhancement of a clinical service to meet the needs of indigenous people; genetic service development in response to issues for New Zealand Maori. Port RV, Arnold J, Kerr D, Glavish N, Winship I.Clin Genet. 2008 Feb;73(2):132-8. doi: 10.1111/j.1399-0004.2007.00943.x. Epub 2007 Dec 29.PMID: 18177468
The Silent Genomes Project: The pursuit of equity in genomics healthcare for Indigenous Peoples in Canada. Presented by Silent Genomes Project team members Brittany Morgan (Community Engagement Coordinator) and Sarah McIntosh (Genetic Counsellor) for the Canadian Association of Genetic Counsellors ‘Current Issues’ Webinar Series, September 9, 2021.
*Trigger warning: This webinar includes a discussion of anti-Indigenous racism within the healthcare system and the harmful history of research done on Indigenous Peoples, which may be triggering for some.
The Code of Life, a Genome BC podcast. EPISODE 012 | April 25, 2021, Bridging the Genomic Divide
The University of British Columbia, UBC Learning Circle
September 29th, 2020 – Silent Genomes Project: Getting Involved in BC
TELUS Storyhive video
Ethical Frameworks for Research Collaboration with Indigenous Communities. ELSI Virtual Forum, Columbia University Department of Medical Humanities and Ethics, June 15-16, 2020, #ELSIvirtual
- Additional resources