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Tools, Approaches and Policy Development
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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
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Capacity Building
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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
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Genetics/Genomics Research with Indigenous Populations
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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
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Single-gene conditions and Clinical Applications
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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