Literature DB >> 36055208

Addressing underrepresentation in genomics research through community engagement.

Amy A Lemke1, Edward D Esplin2, Aaron J Goldenberg3, Claudia Gonzaga-Jauregui4, Neil A Hanchard5, Julie Harris-Wai6, Justin E Ideozu7, Rosario Isasi8, Andrew P Landstrom9, Anya E R Prince10, Erin Turbitt11, Maya Sabatello12, Samantha A Schrier Vergano13, Matthew R G Taylor14, Joon-Ho Yu15, Kyle B Brothers16, Nanibaa' A Garrison17.   

Abstract

The vision of the American Society of Human Genetics (ASHG) is that people everywhere will realize the benefits of human genetics and genomics. Implicit in that vision is the importance of ensuring that the benefits of human genetics and genomics research are realized in ways that minimize harms and maximize benefits, a goal that can only be achieved through focused efforts to address health inequities and increase the representation of underrepresented communities in genetics and genomics research. This guidance is intended to advance community engagement as an approach that can be used across the research lifecycle. Community engagement uniquely offers researchers in human genetics and genomics an opportunity to pursue that vision successfully, including by addressing underrepresentation in genomics research.
Copyright © 2022. Published by Elsevier Inc.

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Year:  2022        PMID: 36055208      PMCID: PMC9502069          DOI: 10.1016/j.ajhg.2022.08.005

Source DB:  PubMed          Journal:  Am J Hum Genet        ISSN: 0002-9297            Impact factor:   11.043


  39 in total

Review 1.  Cultural humility versus cultural competence: a critical distinction in defining physician training outcomes in multicultural education.

Authors:  M Tervalon; J Murray-García
Journal:  J Health Care Poor Underserved       Date:  1998-05

2.  The Havasupai Indian tribe case--lessons for research involving stored biologic samples.

Authors:  Michelle M Mello; Leslie E Wolf
Journal:  N Engl J Med       Date:  2010-06-09       Impact factor: 91.245

3.  Population genomics and research ethics with socially identifable groups.

Authors:  Joan L McGregor
Journal:  J Law Med Ethics       Date:  2007       Impact factor: 1.718

4.  Community dissemination and genetic research: moving beyond results reporting.

Authors:  Susan Brown Trinidad; Evette J Ludman; Scarlett Hopkins; Rosalina D James; Theresa J Hoeft; Annie Kinegak; Henry Lupie; Ralph Kinegak; Bert B Boyer; Wylie Burke
Journal:  Am J Med Genet A       Date:  2015-04-21       Impact factor: 2.802

5.  Recalibrating the Use of Race in Medical Research.

Authors:  John P A Ioannidis; Neil R Powe; Clyde Yancy
Journal:  JAMA       Date:  2021-02-16       Impact factor: 56.272

6.  Engagement and return of results preferences among a primarily African American genomic sequencing research cohort.

Authors:  Katie L Lewis; Erin Turbitt; Priscilla A Chan; Sandra Epps; Barbara B Biesecker; Lori A H Erby; Grace-Ann Fasaye; Leslie G Biesecker
Journal:  Am J Hum Genet       Date:  2021-04-15       Impact factor: 11.025

7.  Why African Americans say "No": A Study of Pharmacogenomic Research Participation.

Authors:  Mohammed Nooruddin; Courtney Scherr; Paula Friedman; Ramesh Subrahmanyam; Jeff Banagan; Diana Moreno; Myurani Sathyanarayanan; Edith Nutescu; Tharani Jeyaram; Mary Harris; Honghong Zhang; Adriana Rodriguez; Mohammed Shaazuddin; Minoli Perera; Matthew Tuck
Journal:  Ethn Dis       Date:  2020-04-02       Impact factor: 1.847

Review 8.  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

9.  Using a social marketing framework to evaluate recruitment of a prospective study of genetic counseling and testing for the deaf community.

Authors:  Yoko Kobayashi; Patrick Boudreault; Karin Hill; Janet S Sinsheimer; Christina G S Palmer
Journal:  BMC Med Res Methodol       Date:  2013-11-25       Impact factor: 4.615

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