Literature DB >> 28434393

Barriers and Strategies Related to Qualitative Research on Genetic Ancestry Testing in Indigenous Communities.

Jessica W Blanchard1, Gloria Tallbull1, Chantelle Wolpert2, Jill Powell3, Morris W Foster4, Charmaine Royal3.   

Abstract

Conducting genetics-related research with populations that have historically experienced considerable harm and little benefit from genetics research poses unique challenges for understanding community-based perceptions of new genetic technologies. This article identifies challenges and strategies for collecting qualitative data on the perceptions of direct-to-consumer (DTC) Genetic Ancestry tests (GAT) among diverse Indigenous communities. Based on a 3-year project related to perceptions, attitudes, and values associated with genetic ancestry testing among diverse Indigenous communities in Oklahoma, the engagement process revealed specific opportunities to improve the process of qualitative data collection related to GAT, and more broadly, to conduct genetics-related research with Indigenous communities in culturally and methodologically appropriate ways. Priority areas include issues related to participant recruitment and tribal advisory boards, challenges of self-identification as a recruitment mechanism, and the necessity of including Indigenous researchers in all aspects of the research process.

Entities:  

Keywords:  DNA; Indigenous/aboriginal/native populations; ancestry; bioethics; community-based; ethnographic methods; genetic research; qualitative methods; research ethics; tribal

Mesh:

Year:  2017        PMID: 28434393      PMCID: PMC5481484          DOI: 10.1177/1556264617704542

Source DB:  PubMed          Journal:  J Empir Res Hum Res Ethics        ISSN: 1556-2646            Impact factor:   1.742


  39 in total

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

Authors:  Malcolm B Bowekaty; Dena S Davis
Journal:  IRB       Date:  2003 Jul-Aug

2.  Lessons learned from community-based participatory research in Indian country.

Authors:  Linda Burhansstipanov; Suzanne Christopher; Sister Ann Schumacher
Journal:  Cancer Control       Date:  2005-11       Impact factor: 3.302

3.  Creating research capacity through a tribally based institutional review board.

Authors:  Deborah J Morton; Joely Proudfit; Daniel Calac; Martina Portillo; Geneva Lofton-Fitzsimmons; Theda Molina; Raymond Flores; Barbara Lawson-Risso; Romelle Majel-McCauley
Journal:  Am J Public Health       Date:  2013-10-17       Impact factor: 9.308

4.  Moving forward: breaking the cycle of mistrust between American Indians and researchers.

Authors:  Christina M Pacheco; Sean M Daley; Travis Brown; Melissa Filippi; K Allen Greiner; Christine M Daley
Journal:  Am J Public Health       Date:  2013-10-17       Impact factor: 9.308

5.  Race, risk, and recreation in personal genomics: the limits of play.

Authors:  Sandra Soo-Jin Lee
Journal:  Med Anthropol Q       Date:  2013-11-08

6.  More than Tuskegee: understanding mistrust about research participation.

Authors:  Darcell P Scharff; Katherine J Mathews; Pamela Jackson; Jonathan Hoffsuemmer; Emeobong Martin; Dorothy Edwards
Journal:  J Health Care Poor Underserved       Date:  2010-08

7.  For the patient. Improving participation of African-American men in research studies.

Authors:  Cathrine Hoyo; M LaVerne Reid; Paul A Godley; Theodore Parrish; Lenora Smith; Marilie Gammon
Journal:  Ethn Dis       Date:  2003       Impact factor: 1.847

8.  The biologistical construction of race: 'admixture' technology and the new genetic medicine.

Authors:  Duana Fullwiley
Journal:  Soc Stud Sci       Date:  2008-10       Impact factor: 3.885

9.  Barriers to cancer clinical trial participation among Native elders.

Authors:  Donna L LaVallie; Fredric M Wolf; Clemma Jacobsen; Dedra Buchwald
Journal:  Ethn Dis       Date:  2008       Impact factor: 1.847

10.  Conducting research with tribal communities: sovereignty, ethics, and data-sharing issues.

Authors:  Anna Harding; Barbara Harper; Dave Stone; Catherine O'Neill; Patricia Berger; Stuart Harris; Jamie Donatuto
Journal:  Environ Health Perspect       Date:  2011-09-02       Impact factor: 9.031

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  5 in total

1.  Impacts of personal DNA ancestry testing.

Authors:  Caryn Kseniya Rubanovich; Riley Taitingfong; Cynthia Triplett; Ondrej Libiger; Nicholas J Schork; Jennifer K Wagner; Cinnamon S Bloss
Journal:  J Community Genet       Date:  2020-08-13

2.  Perspectives on Precision Medicine in a Tribally Managed Primary Care Setting.

Authors:  Julie A Beans; R Brian Woodbury; Kyle A Wark; Vanessa Y Hiratsuka; Paul Spicer
Journal:  AJOB Empir Bioeth       Date:  2020-09-17

3.  "We Don't Need a Swab in Our Mouth to Prove Who We Are": Identity, Resistance, and Adaptation of Genetic Ancestry Testing among Native American Communities.

Authors:  Jessica W Blanchard; Simon Outram; Gloria Tallbull; Charmaine D M Royal
Journal:  Curr Anthropol       Date:  2019-10

4.  Adapting a conceptual framework to engage diverse stakeholders in genomic/precision medicine research.

Authors:  Karriem S Watson; Elizabeth G Cohn; Alecia Fair; Usha Menon; Laura A Szalacha; Selena M Carpenter; Consuelo H Wilkins
Journal:  Health Expect       Date:  2022-03-30       Impact factor: 3.318

5.  Indigenous Genomic Databases: Pragmatic Considerations and Cultural Contexts.

Authors:  Nadine Rena Caron; Meck Chongo; Maui Hudson; Laura Arbour; Wyeth W Wasserman; Stephen Robertson; Solenne Correard; Phillip Wilcox
Journal:  Front Public Health       Date:  2020-04-24
  5 in total

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