[HTML][HTML] Alaska Native genomic research: perspectives from Alaska Native leaders, federal staff, and biomedical researchers

VY Hiratsuka, MJ Hahn, RB Woodbury, SC Hull… - Genetics in …, 2020 - Elsevier
Abstract Meaningful engagement of Alaska Native (AN) tribes and tribal health organizations
is essential in the conduct of socially responsible and ethical research. As genomics …

[HTML][HTML] Precision medicine research with American Indian and Alaska Native communities: results of a deliberative engagement with tribal leaders

SB Trinidad, E Blacksher, RB Woodbury, SE Hopkins… - Genetics in …, 2022 - Elsevier
Purpose Amid calls for greater diversity in precision medicine research, the perspectives of
Indigenous people have been underexplored. Our goals were to understand tribal leaders' …

Deliberations about genomic research and biobanks with citizens of the Chickasaw Nation

J Reedy, JW Blanchard, J Lund, PG Spicer… - Frontiers in …, 2020 - frontiersin.org
Amid the rapid growth of precision medicine and biobanking initiatives, there have been few
efforts at cataloging the implications of these initiatives for Indigenous communities. A …

Genomic research and American Indian tribal communities in Oklahoma: learning from past research misconduct and building future trusting partnerships

JQ Chadwick, KC Copeland, DE Branam… - American journal of …, 2019 - academic.oup.com
Research misconduct and consequential harms have been inflicted upon American
Indian/Alaska Native communities for decades. To protect their people and culture and to …

Found in translation: Decoding local understandings of genetics and heredity in a Yup'ik Eskimo community

KM West, SE Hopkins, KJ Hopper… - Public …, 2013 - journals.sagepub.com
The Center for Alaska Native Health Research is a community-based participatory research
center that conducts studies involving genetic research with Yup'ik Eskimo community …

Fostering ethical, legal, and social implications research in tribal communities: The Center for the Ethics of Indigenous Genomic Research

VY Hiratsuka, JA Beans, J Reedy… - Journal of Empirical …, 2020 - journals.sagepub.com
Genomic research raises unique ethical concerns among Alaska Native and American
Indian (AN/AI) people and their communities. The Center for the Ethics of Indigenous …

Sharing results from complex disease genetics studies: a community based participatory research approach

BB Boyer, GV Mohatt, RL Pasker, EM Drew… - … of Circumpolar Health, 2007 - Taylor & Francis
Objectives. Dissemination of research results to communities builds capacity of the
community to understand and utilize the results. The objective of this manuscript was to …

An Alaska Native community's views on genetic research, testing, and return of results: Results from a public deliberation

VY Hiratsuka, JA Beans, JW Blanchard, J Reedy… - PloS one, 2020 - journals.plos.org
As genetic testing technology advances, genetic testing will move into standard practice in
the primary care setting. Genetic research, testing, and return of results are complex topics …

The role of race and ethnicity in views toward and participation in genetic studies and precision medicine research in the United States: a systematic review of …

ER Fisher, R Pratt, R Esch, M Kocher… - Molecular genetics & …, 2020 - Wiley Online Library
Background Racial/ethnic minority populations in the United States are consistently
underrepresented in genetic research. Large‐scale public participation is required to ensure …

Genetic research with Indigenous Peoples: perspectives on governance and oversight in the US

NA Garrison, SR Carroll - Frontiers in Research Metrics and Analytics, 2023 - frontiersin.org
Introduction Indigenous Peoples are increasingly exerting governance and oversight over
genomic research with citizens of their nations, raising questions about how best to enforce …