This toolkit is for community members, healthcare 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

Canada

International

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)
United Nations Declaration on the Rights of Indigenous Peoples (UNDRIP), 2007

Education

Summer Internship for Indigenous Peoples in Genomics (SING)

SING Canada Learn more Apply for a scholarship
SING US Learn more
SING Aotearoa Learn more
SING Australia Learn more
SING Hawaii (TBD)

Indigenous Cultural Safety Resources for Health Care Providers and Researchers

Silent Genomes project team:

Genetic Counselling Guide v.3, 2021. McIntosh, S and Jacob, K. An Indigenous cultural safety framework for genetic counselors engaging with Indigenous research participants.
Cultural Awareness Guide for those working with Indigenous Genomic Data for the Silent Genomes Research Project Precision Diagnosis Study (Activity 2) and Building an Indigenous Background Variant Library (Activity 3)

Provincial Health Services Authority of British Columbia (PHSA):

San’yas Indigenous Cultural Safety Training Courses

PHSA Indigenous Health Program and Southwest Ontario Aboriginal Health Access Centre:

Indigenous Cultural Safety Collaborative Learning Series

Canadian Institutes of Health Research (CIHR):

Webinar: Research Involving First Nations, Inuit and Métis Peoples of Canada

Ownership, Control, Access, Possession (OCAP®) Training by First Nations Information Governance Centre (FNIGC):

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

Other resources:

Article: Want to reach out to an Indigenous scholar? Awesome! But first, here are 10 things to consider. The Conversation. Published: October 28, 2021 5.24pm EDT

Publications

Tools, Approaches and Policy Development

Extending the CARE Principles from tribal research policies to benefit sharing in genomic research. Carroll, S. R., Plevel, R., Jennings, L. L., Garba, I., Sterling, R., M., F., Hiratsuka, V., Hudson, M., & Garrison, N. (2022). Frontiers in Genetics, 13. https://doi.org/10.3389/fgene.2022.1052620

Using Indigenous Standards to Implement the CARE Principles: Setting Expectations through Tribal Research Codes. Carroll, S. R., Garba, I., Plevel, R., Hiratsuka, V. Y., Hudson, M., & Garrison, N. (2022). Frontiers in Genetics, 13. https://doi.org/10.3389/fgene.2022.823309

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

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

Capacity Building

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 Jan23.PMID: 29297981

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

Single-gene conditions and Clinical Applications

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

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

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

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

Videos

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

May 2nd, 2019 – The Silent Genomes Project: First Nations Perspectives on Precision Diagnosis of Rare Diseases in British Columbia

TELUS Storyhive video

Voicing the Silent Genome

Mshkikiininiikwe: Building the Northern Biobank

Ethical Frameworks for Research Collaboration with Indigenous Communities. ELSI Virtual Forum, Columbia University Department of Medical Humanities and Ethics, June 15-16, 2020, #ELSIvirtual