Trust and willingness to participate in pharmacogenomic research among African Americans: A qualitative study.

Abstract

People with African ancestry make up approximately 2% of the genetic research participant pool, which is particularly important since they also have greater genetic variation compared with people of European descent. Historic and current mistreatment of socially and economically disadvantaged groups, such as African Americans, has negatively impacted their trust in science/scientists and their willingness to participate in medical research, including pharmacogenomics (PGx) research. The goal of this study was to better understand why African Americans agreed to provide a blood sample for a PGx study, with a focus on the role of trust, to inform future recruitment strategies. Participants who provided a blood sample for a PGx study were subsequently recruited for a semi-structured interview conducted in person or online. Interviews were audio recorded and professionally transcribed. This secondary analysis used an inductive thematic analysis approach focused on trust. The results highlight three main themes: sources of mistrust, personal experiences and traits that engendered participation, and research recruiter approaches. Overall, participants in PGx research emphasized that distrust continues to impede African Americans' willingness to participate in medical research. However, participants who chose to participate expressed a need to trust the research team for the betterment of their community. Further, interpersonal communication played a significant role in fostering trust during recruitment. Past experience and historical harms significantly impact willingness to participate in PGx research. Personal characteristics may make some African Americans more open to participation. Lastly, both the content and delivery of study-relevant information are crucial. Research teams should acknowledge harms caused by researchers and other medical professionals when recruiting African American participants for PGx research and prioritize transparent interpersonal communication. This includes clarifying how sensitive data is used and stored, and discussing protocols in place to minimize the risk of data breaches or misuse.