Literature DB >> 31735714

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

Sara Chandros Hull.   

Abstract

"Changing the conversation" around genomic research with U.S. tribal communities may lead to new pathways to address persistent health disparities. Restoring trustworthiness between researchers and communities entails a willingness to listen to Indigenous voices, being flexible, and refining existing policies and frameworks to adapt to communities' needs.

Entities:  

Mesh:

Year:  2019        PMID: 31735714      PMCID: PMC7593832          DOI: 10.1353/hpu.2019.0111

Source DB:  PubMed          Journal:  J Health Care Poor Underserved        ISSN: 1049-2089


  15 in total

1.  After Havasupai litigation, Native Americans wary of genetic research.

Authors: 
Journal:  Am J Med Genet A       Date:  2010-07       Impact factor: 2.802

2.  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

3.  Genomic Justice for Native Americans: Impact of the Havasupai Case on Genetic Research.

Authors:  Nanibaa' A Garrison
Journal:  Sci Technol Human Values       Date:  2012-12-21

Review 4.  Transforming genetic research practices with marginalized communities: a case for responsive justice.

Authors:  Sara Goering; Suzanne Holland; Kelly Fryer-Edwards
Journal:  Hastings Cent Rep       Date:  2008 Mar-Apr       Impact factor: 2.683

5.  Genomics is failing on diversity.

Authors:  Alice B Popejoy; Stephanie M Fullerton
Journal:  Nature       Date:  2016-10-13       Impact factor: 49.962

6.  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

7.  Inclusion of racial and ethnic minorities in genetic research: advance the spirit by changing the rules?

Authors:  Sarah Knerr; Dawn Wayman; Vence L Bonham
Journal:  J Law Med Ethics       Date:  2011       Impact factor: 1.718

Review 8.  Prioritizing diversity in human genomics research.

Authors:  Lucia A Hindorff; Vence L Bonham; Lawrence C Brody; Margaret E C Ginoza; Carolyn M Hutter; Teri A Manolio; Eric D Green
Journal:  Nat Rev Genet       Date:  2017-11-20       Impact factor: 53.242

9.  Using community-based participatory research principles to develop more understandable recruitment and informed consent documents in genomic research.

Authors:  Harlyn G Skinner; Larissa Calancie; Maihan B Vu; Beverly Garcia; Molly DeMarco; Cam Patterson; Alice Ammerman; Jonathan C Schisler
Journal:  PLoS One       Date:  2015-05-04       Impact factor: 3.240

Review 10.  A framework for enhancing ethical genomic research with Indigenous communities.

Authors:  Katrina G Claw; Matthew Z Anderson; Rene L Begay; Krystal S Tsosie; Keolu Fox; Nanibaa' A Garrison
Journal:  Nat Commun       Date:  2018-07-27       Impact factor: 14.919

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