Why African Americans say 'No': A Study of Pharmacogenomic Research Participation
Autor: | Ramesh Subrahmanyam, Paula N. Friedman, Mohammed Shaazuddin, Edith A. Nutescu, Matthew Tuck, Myurani Sathyanarayanan, Jeff Banagan, Courtney L. Scherr, Diana Moreno, Honghong Zhang, Tharani Jeyaram, Mary Harris, Adriana Rodriguez, Minoli A. Perera, Mohammed Nooruddin |
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Rok vydání: | 2020 |
Předmět: |
Adult
Male medicine.medical_specialty Epidemiology Research Subjects Pharmacogenomic Testing Health literacy Young Adult Outpatient setting Medicine Humans Prospective Studies Minority Groups Genetic testing African american Descriptive statistics medicine.diagnostic_test business.industry Outcome measures General Medicine Middle Aged Black or African American Social Perception Pharmacogenetics Pharmacogenomics Family medicine Female Patient Participation business Attitude to Health From the Field: Community Perpspectives on Precision Medicine |
Zdroj: | Ethn Dis |
ISSN: | 1945-0826 |
Popis: | Objective: To identify reasons for nonparticipation by African Americans in cardiovascular pharmacogenomic research. Design: Prospective, open-ended, qualitative survey. Setting: Research staff approached patients eligible for the Discovery Project of The African American Cardiovascular pharmacogenomics CONsorTium in the inpatient or outpatient setting at four different institutions during September and October 2018. Participants: Potential Discovery Project participants self-identified as African American, aged >18 years, were on one of five cardiovascular drugs of interest, and declined enrollment in the Discovery Project. Methods: After declining participation in the Discovery Project, patients were asked, “What are your reasons for not participating?” We analyzed their responses using a directed content analytic approach. Ultimately, responses were coded into one of nine categories and analyzed using descriptive statistics. Main Outcome Measures: Reasons for nonparticipation. Results: Of the 194 people approached for the Discovery Project during an eight-week period, 82 declined participation and provided information for this study. The most common reason for refusal was concern about the amount of blood drawn (19.5%). The next most common reasons for refusal to participate included concerns about genetic testing (14.6%) and mistrust of research (12.2%). Across study sites, significantly more patients enrolled in the inpatient than outpatient setting (P |
Databáze: | OpenAIRE |
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