Literature DB >> 30359103

Responsible Research With Urban American Indians and Alaska Natives.

Rosalina D James1, Kathleen M West1, Katrina G Claw1, Abigail EchoHawk1, Leah Dodge1, Adrian Dominguez1, Maile Taualii1, Ralph Forquera1, Kenneth Thummel1, Wylie Burke1.   

Abstract

American Indian and Alaska Native (AI/AN) communities harbor understandable mistrust of research. Outside researchers have historically controlled processes, promulgating conclusions and recommended policies with virtually no input from the communities studied. Reservation-based communities can apply sovereignty rights conferred by the federal government to change this research trajectory. Many tribes now require review and approval before allowing research activities to occur, in part through the development of regulatory codes and oversight measures. Tribal oversight ensures that research is directed toward questions of importance to the community and that results are returned in ways that optimize problem solving. Unfortunately, tribal governance protections do not always extend to AI/ANs residing in urban environments. Although they represent the majority of AI/ANs, urban Indians face an ongoing struggle for visibility and access to health care. It is against this backdrop that urban Indians suffer disproportionate health problems. Improved efforts to ensure responsible research with urban Indian populations requires attention to community engagement, research oversight, and capacity building. We consider strategies to offset these limitations and develop a foundation for responsible research with urban Indians.

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Year:  2018        PMID: 30359103      PMCID: PMC6236730          DOI: 10.2105/AJPH.2018.304708

Source DB:  PubMed          Journal:  Am J Public Health        ISSN: 0090-0036            Impact factor:   9.308


  16 in total

1.  Cultural issues in genetic research with American Indian and Alaskan Native people.

Authors:  Malcolm B Bowekaty; Dena S Davis
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2.  Behavioral health services in urban American Indian health organizations: A descriptive portrait.

Authors:  Andrew Pomerville; Joseph P Gone
Journal:  Psychol Serv       Date:  2017-05-11

3.  Promoting ethical research with American Indian and Alaska Native people living in urban areas.

Authors:  Nicole P Yuan; Jami Bartgis; Deirdre Demers
Journal:  Am J Public Health       Date:  2014-09-11       Impact factor: 9.308

4.  Urban American Indian Community Perspectives on Resources and Challenges for Youth Suicide Prevention.

Authors:  Rachel L Burrage; Joseph P Gone; Sandra L Momper
Journal:  Am J Community Psychol       Date:  2016-08-31

5.  Rickets and vitamin D deficiency in Alaska native children.

Authors:  Rosalyn Singleton; Rachel Lescher; Bradford D Gessner; Matthew Benson; Lisa Bulkow; John Rosenfeld; Timothy Thomas; Robert C Holman; Dana Haberling; Michael Bruce; Michael Bartholomew; James Tiesinga
Journal:  J Pediatr Endocrinol Metab       Date:  2015-07       Impact factor: 1.634

6.  Variation in genes controlling warfarin disposition and response in American Indian and Alaska Native people: CYP2C9, VKORC1, CYP4F2, CYP4F11, GGCX.

Authors:  Alison E Fohner; Renee Robinson; Joseph Yracheta; Denise A Dillard; Brian Schilling; Burhan Khan; Scarlett Hopkins; Bert Boyer; Jynene Black; Howard Wiener; Hemant K Tiwari; Adam Gordon; Deborah Nickerson; Jesse M Tsai; Federico M Farin; Timothy A Thornton; Allan E Rettie; Kenneth E Thummel
Journal:  Pharmacogenet Genomics       Date:  2015-07       Impact factor: 2.089

7.  Causes and Disparities in Death Rates Among Urban American Indian and Alaska Native Populations, 1999-2009.

Authors:  Jasmine L Jacobs-Wingo; David K Espey; Amy V Groom; Leslie E Phillips; Donald S Haverkamp; Sandte L Stanley
Journal:  Am J Public Health       Date:  2016-02-18       Impact factor: 9.308

8.  The Diabetes Prevention Program (DPP): description of lifestyle intervention.

Authors: 
Journal:  Diabetes Care       Date:  2002-12       Impact factor: 19.112

9.  Cultural challenges to biotechnology: Native American genetic resources and the concept of cultural harm.

Authors:  Rebecca Tsosie
Journal:  J Law Med Ethics       Date:  2007       Impact factor: 1.718

10.  Evaluating community-based participatory research to improve community-partnered science and community health.

Authors:  Sarah Hicks; Bonnie Duran; Nina Wallerstein; Magdalena Avila; Lorenda Belone; Julie Lucero; Maya Magarati; Elana Mainer; Diane Martin; Michael Muhammad; John Oetzel; Cynthia Pearson; Puneet Sahota; Vanessa Simonds; Andrew Sussman; Greg Tafoya; Emily White Hat
Journal:  Prog Community Health Partnersh       Date:  2012
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  7 in total

1.  Beyond the Belmont Principles: A Community-Based Approach to Developing an Indigenous Ethics Model and Curriculum for Training Health Researchers Working with American Indian and Alaska Native Communities.

Authors:  Myra Parker; Cynthia Pearson; Caitlin Donald; Celia B Fisher
Journal:  Am J Community Psychol       Date:  2019-07-29

2.  COVID-19 Among Non-Hispanic American Indian and Alaska Native People Residing in Urban Areas Before and After Vaccine Rollout-Selected States and Counties, United States, January 2020-October 2021.

Authors:  Dornell Pete; Scott L Erickson; Melissa A Jim; Sarah M Hatcher; Abigail Echo-Hawk; Adrian E Dominguez
Journal:  Am J Public Health       Date:  2022-10       Impact factor: 11.561

3.  Tribal Deliberations about Precision Medicine Research: Addressing Diversity and Inequity in Democratic Deliberation Design and Evaluation.

Authors:  Erika Blacksher; Susan Brown Trinidad; R Brian Woodbury; Scarlett E Hopkins; Erica L Woodahl; Bert B Boyer; Wylie Burke; Vanessa Hiratsuka
Journal:  J Empir Res Hum Res Ethics       Date:  2022-02-28       Impact factor: 1.978

4.  Access and Management: Indigenous Perspectives on Genomic Data Sharing.

Authors:  Nanibaa' A Garrison; Krysta S Barton; Kathryn M Porter; Thyvu Mai; Wylie Burke; Stephanie Russo Carroll
Journal:  Ethn Dis       Date:  2019-12-12       Impact factor: 2.006

5.  Diabetes Prevention and Care Capacity at Urban Indian Health Organizations.

Authors:  Meredith P Fort; Margaret Reid; Jenn Russell; Cornelia J Santos; Ursula Running Bear; Rene L Begay; Savannah L Smith; Elaine H Morrato; Spero M Manson
Journal:  Front Public Health       Date:  2021-11-26

6.  Perspectives on Genetic Research: Results From a Survey of Navajo Community Members.

Authors:  Katrina G Claw; Nicolas Dundas; Michael S Parrish; Rene L Begay; Travis L Teller; Nanibaa' A Garrison; Franklin Sage
Journal:  Front Genet       Date:  2021-12-02       Impact factor: 4.599

7.  A randomized clinical trial of an interactive voice response and text message intervention for individuals with hypertension.

Authors:  Emily B Schroeder; Kelly R Moore; Spero M Manson; Megan A Baldwin; Glenn K Goodrich; Allen S Malone; Lisa E Pieper; Stanley Xu; Meredith P Fort; Linda Son-Stone; David Johnson; John F Steiner
Journal:  J Clin Hypertens (Greenwich)       Date:  2020-06-09       Impact factor: 3.738

  7 in total

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