April 4-6, 2024 • Hyatt Regency • Lexington, KY
Innovations in Health Communication
Innovations in Health Communication
Abstract: Trust and Willingness to Participate in Pharmacogenomic Research Among African Americans: A Qualitative Study
Current and historic harms have caused distrust of medical science among African Americans. Genetic research requires participants to provide DNA for analysis, which carries additional concerns about trust (e.g., highly personal information, privacy). Prior studies have speculated on reasons why African Americans decline participation in genetic research, yet few have examined the perspectives of those who participated. The current study examines perspectives about trust and research from African Americans who participated in a pharmacogenomic (PGX) study.
Method
Semi-structured interviews were conducted with African Americans who participated in a PGX study. Patients were eligible if they were: 1) self-described African American, (2) 18 years or older, (3) English-speaking and (4) taking Warfarin or Clopidogrel. Interview audio recordings were transcribed and reviewed for accuracy and to anonymize the data. The first two authors conducted an inductive thematic analysis proceeding with an open approach to closely reading and annotating two transcripts to identify possible codes (Braun & Clarke, 2006). After meeting to discuss the first two transcripts, an initial codebook was developed and applied to the remainder of transcripts using a consensus-based approach to coding.
Results
Four themes were identified across the transcripts.
Acknowledging Harms
Participants told how current and historic (e.g., Tuskegee) mistreatment of African Americans has resulted in general mistrust of medical research in their community and suggested researchers acknowledge these harms when recruiting African Americans. Yet, our participants explained how their personality or experiences (i.e., engagement with science-related news, upbringing) led them to participate in research.
Layers of Trust
Participants described how having good relationships with their doctors and receiving good care at the medical institution where the research was conducted influenced their decision to participate. In some cases, participants believed that participating in the research study was a way they could give back to an organization that they felt had given to them.
Personalized Interactive Recruitment
Participants felt more trusting when research team members answered questions (i.e., about the study protocol and what happens to data once collected), seemed engaged, made eye contact, and treated participants as people rather than subjects for research. Fostering this interpersonal connection is key in terms of making a participant feel more willing to participate in PGX research.
Leap of Faith
Despite asking questions of the recruiter, participants said they still might not completely comprehend the study. They shared concerns that their data could be used in ways they did not agree to, but they participated because it seemed that more good than harm could result, particularly as they considered benefits to their community.
Discussion
Consistent with prior studies, our results suggest the importance of acknowledging past harm done by medical research to the African American community (Brewer et al., 2021), Unique to our study is the importance of the patient experience on their wiliness to participate in research. Future studies should continue to explore this relationship. Finally, research recruiters should be trained in facilitating open and supportive conversations with potential participants that include discussions about personal and community level benefits.
Method
Semi-structured interviews were conducted with African Americans who participated in a PGX study. Patients were eligible if they were: 1) self-described African American, (2) 18 years or older, (3) English-speaking and (4) taking Warfarin or Clopidogrel. Interview audio recordings were transcribed and reviewed for accuracy and to anonymize the data. The first two authors conducted an inductive thematic analysis proceeding with an open approach to closely reading and annotating two transcripts to identify possible codes (Braun & Clarke, 2006). After meeting to discuss the first two transcripts, an initial codebook was developed and applied to the remainder of transcripts using a consensus-based approach to coding.
Results
Four themes were identified across the transcripts.
Acknowledging Harms
Participants told how current and historic (e.g., Tuskegee) mistreatment of African Americans has resulted in general mistrust of medical research in their community and suggested researchers acknowledge these harms when recruiting African Americans. Yet, our participants explained how their personality or experiences (i.e., engagement with science-related news, upbringing) led them to participate in research.
Layers of Trust
Participants described how having good relationships with their doctors and receiving good care at the medical institution where the research was conducted influenced their decision to participate. In some cases, participants believed that participating in the research study was a way they could give back to an organization that they felt had given to them.
Personalized Interactive Recruitment
Participants felt more trusting when research team members answered questions (i.e., about the study protocol and what happens to data once collected), seemed engaged, made eye contact, and treated participants as people rather than subjects for research. Fostering this interpersonal connection is key in terms of making a participant feel more willing to participate in PGX research.
Leap of Faith
Despite asking questions of the recruiter, participants said they still might not completely comprehend the study. They shared concerns that their data could be used in ways they did not agree to, but they participated because it seemed that more good than harm could result, particularly as they considered benefits to their community.
Discussion
Consistent with prior studies, our results suggest the importance of acknowledging past harm done by medical research to the African American community (Brewer et al., 2021), Unique to our study is the importance of the patient experience on their wiliness to participate in research. Future studies should continue to explore this relationship. Finally, research recruiters should be trained in facilitating open and supportive conversations with potential participants that include discussions about personal and community level benefits.