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

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