Literature DB >> 19824292

Decisions to participate in fragile X and other genomics-related research: Native American and African American voices.

Vanessa A Johnson1, Karethy A Edwards, Stephanie L Sherman, Lancer D Stephens, Wendy Williams, Alonna Adair, Mary Helen Deer-Smith.   

Abstract

UNLABELLED: The lack of adequate minority representation, including Native-Americans (NA) and African-Americans (AA), in health related research is well documented. Nowhere is this truer than in the area of genomics-related research, which is especially troubling as NA and AA have some of the highest rates of overall morbidity and mortality due to genetic diseases.
OBJECTIVES: The purpose of this study is to explore factors associated with the under representation of NA and AA adults in genetic research including: (1) decision barriers, (2) the influence of health care networks, (3) recruitment preferences, and (4) health conditions.
METHODS: Eight focus groups were conducted, each by led by individuals who shared racial/cultural identification with participants. Adherence to tenants of Community Based Participatory Research (CBPR) was maintained. Qualitative data were analyzed using NVIVO program analyses and the constant comparative method.
RESULTS: Themes supported the efficacy of CBPR to help demolish barriers while facilitating a willingness to participate in genetics-related research.
CONCLUSIONS: Community-based approaches may enhance representation of minorities in genomics-related research crucial to eliminating health disparities.

Entities:  

Mesh:

Year:  2009        PMID: 19824292

Source DB:  PubMed          Journal:  J Cult Divers        ISSN: 1071-5568


  11 in total

Review 1.  A systematic review of barriers and facilitators to minority research participation among African Americans, Latinos, Asian Americans, and Pacific Islanders.

Authors:  Sheba George; Nelida Duran; Keith Norris
Journal:  Am J Public Health       Date:  2013-12-12       Impact factor: 9.308

2.  Leaves imitate trees: Minnesota Hmong concepts of heredity and applications to genomics research.

Authors:  Kathleen A Culhane-Pera; MaiKia Moua; Pachia Vue; Kang Xiaaj; May Xia Lo; Robert J Straka
Journal:  J Community Genet       Date:  2016-11-07

3.  Recruitment for genetic studies of epilepsy.

Authors:  Sylwia Misiewicz; Melodie R Winawer
Journal:  Epilepsy Res       Date:  2012-04-02       Impact factor: 3.045

4.  Using focus groups in community-based participatory research: challenges and resolutions.

Authors:  Christine Makosky Daley; Aimee S James; Ezekiel Ulrey; Stephanie Joseph; Angelia Talawyma; Won S Choi; K Allen Greiner; M Kathryn Coe
Journal:  Qual Health Res       Date:  2010-02-12

5.  Views of Black nurses toward genetic research and testing.

Authors:  Yolanda M Powell-Young; Ida J Spruill
Journal:  J Nurs Scholarsh       Date:  2013-03-07       Impact factor: 3.176

6.  How Do Low-Income Urban African Americans and Latinos Feel about Telemedicine? A Diffusion of Innovation Analysis.

Authors:  Sheba George; Alison Hamilton; Richard S Baker
Journal:  Int J Telemed Appl       Date:  2012-09-10

7.  Recruitment of racial/ethnic minority older adults through community sites for focus group discussions.

Authors:  Mary E Northridge; Michele Shedlin; Eric W Schrimshaw; Ivette Estrada; Leydis De La Cruz; Rogelina Peralta; Stacia Birdsall; Sara S Metcalf; Bibhas Chakraborty; Carol Kunzel
Journal:  BMC Public Health       Date:  2017-06-09       Impact factor: 3.295

8.  A systematic literature review of Native American and Pacific Islanders' perspectives on health data privacy in the United States.

Authors:  Riley Taitingfong; Cinnamon S Bloss; Cynthia Triplett; Julie Cakici; Nanibaa' Garrison; Shelley Cole; Julie A Stoner; Lucila Ohno-Machado
Journal:  J Am Med Inform Assoc       Date:  2020-12-09       Impact factor: 4.497

9.  Diversity in Clinical and Biomedical Research: A Promise Yet to Be Fulfilled.

Authors:  Sam S Oh; Joshua Galanter; Neeta Thakur; Maria Pino-Yanes; Nicolas E Barcelo; Marquitta J White; Danielle M de Bruin; Ruth M Greenblatt; Kirsten Bibbins-Domingo; Alan H B Wu; Luisa N Borrell; Chris Gunter; Neil R Powe; Esteban G Burchard
Journal:  PLoS Med       Date:  2015-12-15       Impact factor: 11.069

10.  Enhancing Recruitment and Retention of Minority Populations for Clinical Research in Pulmonary, Critical Care, and Sleep Medicine: An Official American Thoracic Society Research Statement.

Authors:  Neeta Thakur; Stephanie Lovinsky-Desir; Donna Appell; Christian Bime; Lauren Castro; Juan C Celedón; Juliana Ferreira; Maureen George; Yolanda Mageto; Arch G Mainous III; Smita Pakhale; Kristin A Riekert; Jesse Roman; Elizabeth Ruvalcaba; Sunil Sharma; Priya Shete; Juan P Wisnivesky; Fernando Holguin
Journal:  Am J Respir Crit Care Med       Date:  2021-08-01       Impact factor: 21.405

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