Literature DB >> 24134381

Creating research capacity through a tribally based institutional review board.

Deborah J Morton1, Joely Proudfit, Daniel Calac, Martina Portillo, Geneva Lofton-Fitzsimmons, Theda Molina, Raymond Flores, Barbara Lawson-Risso, Romelle Majel-McCauley.   

Abstract

Tribal groups work tirelessly to maintain sovereignty rights, preserving and upholding tribal authority and protection over their land, people, businesses, and health. Moreover, the conduct of health science research by outsiders has had its share of an unethical, misguided, and abusive past. Tribally based institutional review boards (IRBs) are addressing these issues in an effort to control new health science research, set their own research agenda, and protect their people in the same spirit as has been accomplished through the perpetuation of sovereignty rights. We describe the success of a tribally based IRB at creating new capacity for health research and enhanced levels of trust, including bidirectional cultural education between academic researchers and tribal IRB committee members.

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Year:  2013        PMID: 24134381      PMCID: PMC3828979          DOI: 10.2105/AJPH.2013.301473

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


  15 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.  When two tribes go to war.

Authors:  Rex Dalton
Journal:  Nature       Date:  2004-07-29       Impact factor: 49.962

3.  Access, relevance, and control in the research process: lessons from Indian country.

Authors:  Spero M Manson; Eva Garroutte; R Turner Goins; Patricia Nez Henderson
Journal:  J Aging Health       Date:  2004-11

4.  Community-building versus career-building research: the challenges, risks, and responsibilities of conducting research with Aboriginal and Native American communities.

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Journal:  J Cancer Educ       Date:  2005       Impact factor: 2.037

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

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Journal:  Cancer Control       Date:  2005-11       Impact factor: 3.302

Review 6.  Ethical goals of community consultation in research.

Authors:  Neal Dickert; Jeremy Sugarman
Journal:  Am J Public Health       Date:  2005-06-16       Impact factor: 9.308

7.  Research and American Indian/Alaska Native health: a nursing perspective.

Authors:  Lillian Tom-Orme
Journal:  J Transcult Nurs       Date:  2006-07       Impact factor: 1.959

8.  Developing a Code of Research Ethics for research with a Native community in Canada: a report from the Kahnawake Schools Diabetes Prevention Project.

Authors:  A C Macaulay; E J Cross; T Delormier; L Potvin; G Paradis; A McComber
Journal:  Int J Circumpolar Health       Date:  1998       Impact factor: 1.228

9.  Recruitment of American Indians and Alaska Natives into clinical trials.

Authors:  F S Hodge; S Weinmann; Y Roubideaux
Journal:  Ann Epidemiol       Date:  2000-11       Impact factor: 3.797

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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  20 in total

1.  Community-Based Review of Research Across Diverse Community Contexts: Key Characteristics, Critical Issues, and Future Directions.

Authors:  Nancy Shore; Angela Ford; Eric Wat; Missy Brayboy; Mei-Ling Isaacs; Alice Park; Hal Strelnick; Sarena D Seifer
Journal:  Am J Public Health       Date:  2015-05-14       Impact factor: 9.308

2.  The adaptation and implementation of a community-based participatory research curriculum to build tribal research capacity.

Authors:  Valarie Blue Bird Jernigan; Tvli Jacob; Dennis Styne
Journal:  Am J Public Health       Date:  2015-04-23       Impact factor: 9.308

3.  Enhancing stewardship of community-engaged research through governance.

Authors:  John G Oetzel; Malia Villegas; Heather Zenone; Emily R White Hat; Nina Wallerstein; Bonnie Duran
Journal:  Am J Public Health       Date:  2015-04-16       Impact factor: 9.308

4.  Beyond Belmont: Ensuring Respect for AI/AN Communities Through Tribal IRBs, Laws, and Policies.

Authors:  Sara Chandros Hull; David R Wilson Diné
Journal:  Am J Bioeth       Date:  2017-07       Impact factor: 11.229

5.  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

6.  Changing the Conversation about The Ethics of Genomics and Health Disparities Research with American Indian and Alaska Native Communities: A Report from the Field.

Authors:  Sara Chandros Hull
Journal:  J Health Care Poor Underserved       Date:  2019

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

Authors:  Jessica W Blanchard; Gloria Tallbull; Chantelle Wolpert; Jill Powell; Morris W Foster; Charmaine Royal
Journal:  J Empir Res Hum Res Ethics       Date:  2017-04-23       Impact factor: 1.742

8.  Building Capacity for Productive Indigenous Community-University Partnerships.

Authors:  Joel Gittelsohn; Annie Belcourt; Maya Magarati; Cathryn Booth-LaForce; Bonnie Duran; Shiraz I Mishra; Lorenda Belone; Valarie Blue Bird Jernigan
Journal:  Prev Sci       Date:  2020-01

9.  Deliberations with American Indian and Alaska Native People about the Ethics of Genomics: An Adapted Model of Deliberation Used with Three Tribal Communities in the United States.

Authors:  Erika Blacksher; Vanessa Y Hiratsuka; Jessica W Blanchard; Justin R Lund; Justin Reedy; Julie A Beans; Bobby Saunkeah; Micheal Peercy; Christie Byars; Joseph Yracheta; Krystal S Tsosie; Marcia O'Leary; Guthrie Ducheneaux; Paul G Spicer
Journal:  AJOB Empir Bioeth       Date:  2021-06-14

10.  Fostering Ethical, Legal, and Social Implications Research in Tribal Communities: The Center for the Ethics of Indigenous Genomic Research.

Authors:  Vanessa Y Hiratsuka; Julie A Beans; Justin Reedy; Joseph M Yracheta; Michael T Peercy; Bobby Saunkeah; R Brian Woodbury; Marcia O'Leary; Paul G Spicer
Journal:  J Empir Res Hum Res Ethics       Date:  2019-09-09       Impact factor: 1.742

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