Literature DB >> 27664025

If We Would Only Ask: How Henrietta Lacks Continues to Teach Us About Perceptions of Research and Genetic Research Among African Americans Today.

Bridgette L Jones1,2,3,4,5, Carrie A Vyhlidal6,7,8,9, Andrea Bradley-Ewing6,8,10, Ashley Sherman6,8,10, Kathy Goggin6,8,9,10.   

Abstract

BACKGROUND: African Americans are under-represented in research, and there are perceptions of unwillingness among African Americans to participate in research. We explored barriers to African American research participation.
METHODS: We conducted a cross-sectional survey to explore knowledge and beliefs regarding medical and genetic research among adults (n = 169) at urban community events. Descriptive data were summarized by frequencies for survey responses.
RESULTS: Only 13 % of respondents had ever been approached for research; 93 % of those who had been approached for research had participated. Eighty-six percent of those who had previous research experience indicated willingness to participate again vs. only 30 % among those with no research experience. Seventy-four percent had altruistic views of research; 28 % were concerned about truthfulness of researchers; 52 % feared incidental discoveries.
CONCLUSION: African Americans have favorable views of research; however, few are being engaged in studies. Effective interventions to address identified barriers may improve participation and lead to better health outcomes among African Americans.

Keywords:  Asthma; Disparities; Genetics; Research; Underserved

Mesh:

Year:  2016        PMID: 27664025     DOI: 10.1007/s40615-016-0277-1

Source DB:  PubMed          Journal:  J Racial Ethn Health Disparities        ISSN: 2196-8837


  26 in total

1.  Investigator beliefs and reported success in recruiting minority participants.

Authors:  Ishan Canty Williams; Giselle Corbie-Smith
Journal:  Contemp Clin Trials       Date:  2006-07-12       Impact factor: 2.226

2.  Participation in research studies: factors associated with failing to meet minority recruitment goals.

Authors:  Raegan W Durant; Roger B Davis; Diane Marie M St George; Ishan Canty Williams; Connie Blumenthal; Giselle M Corbie-Smith
Journal:  Ann Epidemiol       Date:  2007-05-25       Impact factor: 3.797

3.  Research electronic data capture (REDCap)--a metadata-driven methodology and workflow process for providing translational research informatics support.

Authors:  Paul A Harris; Robert Taylor; Robert Thielke; Jonathon Payne; Nathaniel Gonzalez; Jose G Conde
Journal:  J Biomed Inform       Date:  2008-09-30       Impact factor: 6.317

4.  Medical research: Missing patients.

Authors:  Esteban G Burchard
Journal:  Nature       Date:  2014-09-18       Impact factor: 49.962

5.  Reasons for participating and genetic information needs among racially and ethnically diverse biobank participants: a focus group study.

Authors:  Samantha A Streicher; Saskia C Sanderson; Ethylin Wang Jabs; Michael Diefenbach; Meg Smirnoff; Inga Peter; Carol R Horowitz; Barbara Brenner; Lynne D Richardson
Journal:  J Community Genet       Date:  2011-06-07

6.  Perceptions of African-American health professionals and community members on the participation of children and pregnant women in genetic research.

Authors:  E M Ngui; T D Warner; L W Roberts
Journal:  Public Health Genomics       Date:  2013-11-06       Impact factor: 2.000

7.  Race, medical researcher distrust, perceived harm, and willingness to participate in cardiovascular prevention trials.

Authors:  Joel B Braunstein; Noëlle S Sherber; Steven P Schulman; Eric L Ding; Neil R Powe
Journal:  Medicine (Baltimore)       Date:  2008-01       Impact factor: 1.889

8.  Warfarin pharmacogenetics: an illustration of the importance of studies in minority populations.

Authors:  M A Perera; L H Cavallari; J A Johnson
Journal:  Clin Pharmacol Ther       Date:  2014-03       Impact factor: 6.875

9.  Recruitment of minority and underserved populations in the United States: the Centers for Population Health and Health Disparities experience.

Authors:  Electra D Paskett; Katherine W Reeves; John M McLaughlin; Mira L Katz; Ann Scheck McAlearney; Mack T Ruffin; Chanita Hughes Halbert; Cristina Merete; Faith Davis; Sarah Gehlert
Journal:  Contemp Clin Trials       Date:  2008-07-31       Impact factor: 2.226

10.  Community-based participatory research: lessons learned from the Centers for Children's Environmental Health and Disease Prevention Research.

Authors:  Barbara A Israel; Edith A Parker; Zachary Rowe; Alicia Salvatore; Meredith Minkler; Jesús López; Arlene Butz; Adrian Mosley; Lucretia Coates; George Lambert; Paul A Potito; Barbara Brenner; Maribel Rivera; Harry Romero; Beti Thompson; Gloria Coronado; Sandy Halstead
Journal:  Environ Health Perspect       Date:  2005-10       Impact factor: 9.031

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  13 in total

Review 1.  Post-GWAS in Psychiatric Genetics: A Developmental Perspective on the "Other" Next Steps.

Authors:  Danielle M Dick; Peter B Barr; Seung Bin Cho; Megan E Cooke; Sally I-Chun Kuo; Tenesha J Lewis; Zoe Neale; Jessica E Salvatore; Jeanne Savage; Jinni Su
Journal:  Genes Brain Behav       Date:  2018-02-05       Impact factor: 3.449

2.  From Principles to Practice: Real-World Patient and Stakeholder Engagement in Breast Cancer Research.

Authors:  Sarah M Greene; Susan Brandzel; Karen J Wernli
Journal:  Perm J       Date:  2018

3.  Attitudes and experiences regarding genetic research among persons of African descent.

Authors:  Denise M Scott; Veronica G Thomas; Jane Otado; Faun Rockcliffe; Omotomilade Olopoenia; Dietrich Johnson; Shawneequa Callier
Journal:  J Community Genet       Date:  2019-05-06

4.  The Genomics of Colorectal Cancer in Populations with African and European Ancestry.

Authors:  Parvathi A Myer; Jessica K Lee; Russell W Madison; Kith Pradhan; Justin Y Newberg; Carmen R Isasi; Samuel J Klempner; Garrett M Frampton; Jeffery S Ross; Jeffrey M Venstrom; Alexa B Schrock; Sudipto Das; Leonard Augenlicht; Amit Verma; John M Greally; Srilakshmi M Raj; Sanjay Goel; Siraj M Ali
Journal:  Cancer Discov       Date:  2022-05-02       Impact factor: 38.272

5.  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

6.  An Approach to Integrating Health Disparities within Undergraduate Biomedical Engineering Education.

Authors:  Maribel Vazquez; Otto Marte; Joseph Barba; Karen Hubbard
Journal:  Ann Biomed Eng       Date:  2017-08-28       Impact factor: 3.934

7.  Metabolomic Markers of Southern Dietary Patterns in the Jackson Heart Study.

Authors:  Casey M Rebholz; Yan Gao; Sameera Talegawkar; Katherine L Tucker; Lisandro D Colantonio; Paul Muntner; Debby Ngo; Zsu Zsu Chen; Daniel Cruz; Daniel H Katz; Usman A Tahir; Clary Clish; Robert E Gerszten; James G Wilson
Journal:  Mol Nutr Food Res       Date:  2021-03-11       Impact factor: 5.914

8.  Learning from Black/African American Participants: Applying the Integrated Behavioral Model to Assess Recruitment Strategies for a Glaucoma Genetic Study.

Authors:  Ava Kikut; Mohima Sanyal; Marquis Vaughn; Katherine Ellen Ridley-Merriweather; Katharine Head; Rebecca Salowe; Sara Lomax-Reese; Monica Lewis; Ahmara G Ross; Qi N Cui; Victoria Addis; Prithvi S Sankar; Eydie Miller-Ellis; Joan M O'Brien
Journal:  Health Commun       Date:  2020-12-19

9.  Community Engagement Practices at Research Centers in U.S. Minority Institutions: Priority Populations and Innovative Approaches to Advancing Health Disparities Research.

Authors:  Tabia Henry Akintobi; Payam Sheikhattari; Emma Shaffer; Christina L Evans; Kathryn L Braun; Angela U Sy; Bibiana Mancera; Adriana Campa; Stephania T Miller; Daniel Sarpong; Rhonda Holliday; Julio Jimenez-Chavez; Shafiq Khan; Cimona Hinton; Kimberly Sellars-Bates; Veronica Ajewole; Nicolette I Teufel-Shone; Juliet McMullin; Sandra Suther; K Sean Kimbro; Lorraine Taylor; Carmen M Velez Vega; Carla Williams; George Perry; Stephan Zuchner; Melissa Marzan Rodriguez; Paul B Tchounwou
Journal:  Int J Environ Res Public Health       Date:  2021-06-21       Impact factor: 3.390

10.  Impact of dedicated women's outreach workers (WOWs) on recruitment of women in ACTG clinical studies.

Authors:  Elizabeth Barr; Karine Dubé; Shobha Swaminathan; Carlos Del Rio; Danielle M Campbell; Marta Paez-Quinde; Susan E Cohn
Journal:  HIV Res Clin Pract       Date:  2021-06-18
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