Indigenizing Genomics
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- Walter Knight
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1 Indigenizing Genomics Enhancing genomic research through an indigenous perspective!! National Congress of American Indians! Science and Sovereignty! June 29, 2016
2 Indigenous Genome Scientists Katrina G. Claw, Ph.D. Diné (Navajo)! University of Washington! Joseph Yracheta, M.S. P'urhépecha (Tarascan) and Raramurí (Tarahumara)! Missouri Breaks Industries Research, Inc.! Keolu Fox, Ph.C. Kanaka Maoli (Native Hawaiian)! University of Washington!
3 Overview A Continuum of Research in Indigenous Communities! ON IN WITH BY Past What is genomics?! History of past research! Moving forward! Present Current genetic research in/with Native American communities! Future New genomic technology! Building tribal research! capacity!
4 A C B D
5 What do you think about the conference so far? A. Loving it! B. It s ok.! C. My butt hurts from sitting.! D. Time to go home.!
6 Are you familiar with genomics or genetics research? A. A little bit! B. A lot! C. Never heard of it! D. Want to know more!
7 How can we indigenize genomics? Indigenize = to make our own! Genetics = the study of heredity in a single or subset of genes (DNA instructions) in living organisms! Genomics = the study of the entire set of DNA of an organism! DNA instructions!! AGTCGTACCCAAG!
8 How can we indigenize genomics? Indigenize = to make our own! Genetics = the study of heredity in a single or subset of genes (DNA instructions) in living organisms! Genomics = the study of the entire set of DNA of an organism! Courtesy of Dr. Nanibaa Garrison! DNA Sequencing begins!
9 What can genomics do for us? Predict susceptibility to certain diseases! Determine which drugs and what doses you should take! Avoid getting certain diseases (preventative)! Eliminate diseases (e.g. vaccines)! Increase knowledge of ourselves and environment! Inform policy decisions!
10 Why should this matter to Indigenous people? 96% Genome-wide Association Studies (GWAS)! European Descent 4% Non- European Descent Bustamante, Nature, 2011!
11 Have ever wanted to have your DNA sequenced? A. Absolutely! B. Already have! C. Thinking about it! D. Never!
12 Replacing our Knowledge Modified slide from Dr. Bonnie Duran!
13 Health research and Colonial Episteme determine question of whether true Indian is dying out.! Hoffman, F. (1928). The Navaho Population Problem. Proceedings of the twenty-third International Congress of Americanists 23, ! Hoffman, F. (1930). Are the Indians Dying Out? American Journal of Public Health, 20, ! Modified slide from Dr. Bonnie Duran!
14 Limiting Research Involving Tribal DNA Havasupai Tribe vs. Arizona State University Board of Reagents Settled out of court in 2010!
15 Issues in genomics research More broadly: Institutional memory and distrust! Sovereignty and treaty obligations! Communication between academic institutions and tribal communities! Research: Research benefits! Broad consent forms! Biospecimen storage! Data Sharing! Intellectual property! Research oversight!
16 How can tribes move forward in research? Train and support Indigenous people! Build tribal research capacity Merge Indigenous knowledge and research methods! Use Community-Based Participatory Research (CBPR) and other inclusive frameworks! Democratize research and technology!
17 Overview A Continuum of Research in Indigenous Communities! ON IN WITH BY Past Present Future What is genomics?! History of past research! Moving forward! Current genetic research in/with Native American communities! New genomic technology! Building tribal research! capacity!
18 If you participated in a research study, what kind of benefits would be most meaningful to you? A. Getting answers for health problems and illnesses in my community.! B. Compensation for participating in research! C. Increasing knowledge for all people! D. Socialize and meeting new people!
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