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Native American Heritage Month Event: “I am the data, the data is me!”: Centering Culture and Indigenist Ethics and Principles in Building an Indigenous Reference Genome

Air date: Tuesday, November 26, 2024, 4:00:00 PM
Time displayed is Eastern Time, Washington DC Local
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Description: In honor of Native American Heritage Month, the NIH Tribal Health Research Office invites you to a distinguished panel presentation featuring world renown Indigenous genomic researchers and bioethicists as they share their insights in developing cultural and ethical practices for developing an Indigenous reference genome. An Indigenous reference genome is a genomic sequence that represents the genetic material of a specific Indigenous population or community. Unlike standard reference genomes, which may be based on a single or a few individuals from a broader population, an Indigenous reference genome aims to capture the unique genetic diversity and characteristics of a particular Indigenous group. This type of reference is crucial for various research applications, such as medical studies, conservation efforts, and understanding evolutionary history. It helps ensure that genomic analyses are more accurate and relevant for that specific Tribal population given that unique genetic variations and adaptations that are not likely represented in more general reference genomes. Creating an Indigenous reference genome involves direct consent, consultation, and deep collaboration with Indigenous communities to ensure Indigenous research laws are upheld and that ethical considerations and cultural sensitivities are respected throughout the research process. Our Indigenous expert panel will provide invaluable global insights into this complex and vital topic. Panelists Krystal Tsosie, Ph.D., M.P.H., M.A. (Dine’/Navajo Nation, USA), Geneticist-bioethicist, Assistant Professor, School of Life Sciences Human Dimensions Associate Director, Biodiversity Knowledge Integration Center Arizona State University Alex Brown, Ph.D., M.P.H.,(FCSANZ, FAHMS)(Yuin/Djuwin Nation, New South Wales, AUS) Medical doctor and genomics researcher, chronic health among aboriginal populations Director, National Centre for Indigenous Genomics Professor of Indigenous Genomics, Telethon Kids Institute The Australian National University Phillip Wilcox, Ph.D. (Ngāti Rakaipaaka, Rongomaiwahine, Ngāti Kahungunu ki te Wairoa, NZ) Quantitative geneticist and bioethicist Associate Professor, Department of Mathematics and Statistics Te Tari Pakarau me Tātauranga University of Otago – Ōtākou Whakaihu Waka NIH Tribal Health Research Office Theme: “I am the Data, the Data is Me!” This theme guides our ongoing initiative to develop an Indigenous Data Sovereignty (IDS) Policy—a groundbreaking effort by the NIH, set for release in Spring 2025. The IDS Policy aims to affirm the unique sovereign rights of Tribal Nations in data governance. As part of this commitment, we are conducting Tribal consultations this December, gathering insights from this year’s listening sessions with Tribal leaders. We welcome you to join this important discussion and hear from our distinguished speakers on November 26. Together, let’s contribute to a deeper understanding of Indigenous perspectives on data sovereignty. Join us on the NIH Videocast to be part of this impactful event.

For more information go to https://dpcpsi.nih.gov/thro
Author: Krystal Tsosie, Ph.D., M.P.H., M.A., Alex Brown, Ph.D., M.P.H., FCSANZ, FAHMS Phillip Wilcox, Ph.D.
Runtime: 1 hour, 30 minutes