Why African Americans say “No” A Study of Pharmacogenomic Research Participation

• Published in: Ethnicity & disease Vol. 30; no. Suppl 1; pp. 159 - 166
• Main Authors: Nooruddin, Mohammed, Scherr, Courtney, Friedman, Paula, Subrahmanyam, Ramesh, Banagan, Jeff, Moreno, Diana, Sathyanarayanan, Myurani, Nutescu, Edith, Jeyaram, Tharani, Harris, Mary, Zhang, Honghong, Rodriguez, Adriana, Shaazuddin, Mohammed, Perera, Minoli, Tuck, Matthew
• Format: Journal Article
• Language: English
• Published: United States Ethnicity & Disease, Inc 2020
• Subjects: Adult; African Americans - psychology; Attitude to Health - ethnology; Female; From the Field: Community Perpspectives on Precision Medicine; Humans; Male; Middle Aged; Minority Groups - psychology; Patient Participation - psychology; Pharmacogenetics - ethics; Prospective Studies; Research Subjects - psychology; Social Perception; Young Adult; Health Practice/Ethnology; Psychology; Health Literacy; Research Participants; African Americans; Health Knowledge; Health Attitudes; Pharmacogenomic Testing
• ISSN: 1049-510X; 1945-0826; 1945-0826
• DOI: 10.18865/ed.30.S1.159

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<.001). Significantly more women and younger individuals declined participation due to concerns about genetic testing and too little compensation (P<.05).Conclusions: Collection of blood samples and concerns about genetic testing are ob­stacles for the recruitment of African Ameri­cans to pharmacogenomics studies. Efforts to overcome these barriers to participation are needed to improve representation of minorities in pharmacogenomic research. Enrolling participants from inpatient populations may be a solution to bolster recruitment efforts.Ethn Dis. 2020;30(Suppl 1):159-166; doi:10.18865/ed.30.S1.159